History

Friday, July 20, 2006 1:25 PM CDT

They say that no news is good news, and I am happy to report (finally) that the last several months have been no exception to this rule.

Hayden has been doing absolutely great. And today, exactly two years after we first learned of her devastating diagnosis, we cannot imagine being in a better position.

Hayden finished out second grade at Wyngate with her wonderful teacher, Matt Gamard. Although she is still a bit behind in her reading, and has some difficulty decoding words, her transition was very smooth. Her friends are as wonderful and beautiful as only young children can be. And she absolutely loved getting back into a regular routine.

In the meantime, Hayden was in the spotlight for quite a while as the 2006 Girl of the Year for the National Capitol Chapter of the Leukemia and Lymphoma Society. Two years since the beginning of her treatment, she has gained a real consciousness about what she went through. And because of her incredible sensitivity and empathy, she is really driven to try to help other children who are battling cancer. The campaign not only allowed her to feel like she was making a difference, but also gave her an incredible sense of self-confidence. We were somewhat hesitant about getting her involved in this campaign, and Dr. K thought Hayden might be too shy to do it.

Boy were we wrong. Not only did she take incredible pride in her role, but she also seemed to really enjoy being a spokesperson. At the Gala event that capped off the campaign she wrote out a speech and made it to a crowd of over 400 people--on her own initiative.

The campaign was an incredible success, and the National Chapter raised over $700,000 for the Leukemia and Lymphoma Society. Dr. George Bitar won the "competition" on the local and national level. So he and Hayden are both going to appear in USA Today sometime soon. I promise that we will keep you posted!

On other fronts, Hayden and Jordan just got back from a week-long sleepover camp in Pennsylvania for oncology patients and their siblings. Hayden's art therapist, Lori Mackey, is a counselor there. Lori is one of Hayden's very best friends (she really relates better to adults than kids since her treatment) and she recently moved to Chicago. So Hayden and Jordan were both incredibly excited about going to spend a week with her.

It was very stressful for Natalie to be away from Hayden for such a long time. It was the first time since Hayden got sick that she was not a stone's throw away at all times. I've been travelling to CA a LOT lately, so I have sorta gotten used to it. Also, when I go out of town, I know that she is in the best possible hands--Natalie's. So this was a real test for all of us, and I think we passed with flying colors. Hayden had a blast, and Natalie survived! Jordan, despite all of her toughness, actually got pretty homesick, and was very happy to come home. Hayden wanted to stay longer!

So although I am really sorry that we haven't provided more updates for you, I hope you will be glad to know that we are all doing great. We are gearing up for the Light the Night walk in October, and Hayden has big plans for setting up a carnival to raise money for the Leukemia and Lymphoma Society. So please stay tuned . . .

We are going to add some new pictures and links soon. You won't believe how great Hayden looks!

Thanks for checking in on us. Please keep praying for and thinking about Hayden's friends (and all of the other precious children) who are still fighting an uphill fight against cancer. Please visit Blake's website on caring bridge (www.caringbridge.org/visit/blakehaines) and send your thoughts and prayers to him and his family as he prepares for his second bone marrow transplant. Also keep Joshua in your thoughts and prayers as he prepares to go to Duke for his first transplant(www.caringbridge.org/visit/Joshuabrett). Blake is currently being treated at Duke and Joshua is preparing to go. They will both be in good hands.

Hayden is an incredibly lucky child so far, but she will never allow us to become complacent about the horror that cancer still inflicts on families around the world everyday.

And on another note, let us all hope that the pain and suffering in the Middle East, the birthplace of many of the world's great religions and cultures, will soon end.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan, and Isabella

Wednesday, December 28, 2005 8:51 PM CST

Like many of you, I have been reflecting on the close of 2005 and the beginning of a new year. 2005 has been a spectacular year for our family in many ways. A year that will never be forgotten. A year of terrible fear, awe inspiring hope, saturated in death, and finally, for us, injected with rejuvination.

We watched Dr. Kurtberg in the documentary on UNCTV explaining that about 50f the children do not survive cord blood transplants. And we cried again over the loss of our friends who are too many name here. And at the same time, we were able to celebrate in triumph Hayden's continuing success in her battles for survival. But at the same time, how do you put away the feelings of grief?

We were at dinner the other night. Hayden was goofing off, and just being herself. Her real self. Outgoing, silly, sometimes a little annoying, and breathtakingly sincere. They had a magician who came to the table to do tricks. Hayden loves magic and was going nuts, cutting up with her sisters and her cousins. And suddenly I thought, "What if Hayden weren't here with us right now. My God, this would be so different. I wouldn't be happy and laughing like I am now. I would be so sad that I don't think I would have anything left for Jordan or Izzy. How are the families who lost their children able to handle it. What spared us, so far?" But that moment was ultimately washed away in the now. The immediacy of Hayden's happiness. And the happiness it gave me. So I guess this is a long way of saying that the holidays have a really weird context that sort of amplifies everything. It makes everything happy even happier. And it makes everything sad even sadder.

With respect to the happy. . .

Thhis was the first Christmas at home that Isabella can remember. And she was way into it. She's been asking when Christmas would come for months. And she enjoyed EVERY minute of it. She had a grin on her face for almost every minute of the last week. She loves the pets, and seems to not know or maybe care that her sisters both got pets and she didn't. As far as she is concerned, they are hers to do with as she likes. And she likes. A lot. She puts the kitten in a basket and carries her around the house. She picks it up too rough, and hugs it too tight. She has scratches on her hands and face to prove it. But she loves her, and just keeps on going no matter how many scratches she gets. And the kitten loves her just as ferociously. She even sits in the bathroom outside the tub while Izzy gets a bath.

Jordan has also been a delight. I think she is excited that her sister is coming back to school. And I think slowly they are rebuilding the bond that was broken between them. About a year and a half ago, they were inseparable buddies routinely mistaken for twins. Now, they are sisters slowly beginning to appreciate and enjoy their ample differences and strong commonalities. Jordan is more affectionate than ever. Which to me shows that she is less afraid of letting us in. And willing to accept our love with less skepticism. She lets us hug her and kiss her without turning away. And sometimes she comes to us for hugs and kisses. That's a lot from her. And we try not to take it for granted.

I remember that I always wanted kids because of the things I thought I could learn from them. Well, they are definitely proving their worth in that department. These kids have given me the education of a lifetime. And rejuvinated my own perception of the world. 2005 forever changed all of us.

Let's hope for a less eventful 2006.

Wednesday, November 30, 2005 7:34 PM CST

Update- We got the wonderful news today that our beautiful daughter remains 100onor cells! Our family could not be happier!!! Now we can begin to celebrate this long-awaited milestone. We hope that everyone enjoys their holidays as much as our family will!

We have lots of news, both happy and sad, to share with you. First, tomorrow, December 1, 2005 is Hayden's One Year Anniversary from her transplant. Although this is an exciting date for psychological and emotional reasons, it is also very meaningful from the standpoint of Hayden's long term prognosis. After a year, the risk of relapse is very, very low. Indeed, Dr. Kurtzberg says the risk is less than two percent. To put this into perspective, when Hayden relapsed just over a year ago, we were told that her overall chance of survival was around 15-25 The greatest risks were the actual transplant, and the very high chance of relapse. To make it one year, disease free, with 100onor cells, is an amazing milestone.

We went to Duke for Hayden's one year appointment earlier this week, and will know the results of her chimerism test by early next week. Please keep your fingers crossed that she remains 100onor cells--although I must say I have no doubt in my mind that she will be.

The appointments at Duke and Chapel Hill went very well. Hayden went through a full day of neurodevelopmental tests with one of the best programs in the country. We do not know the full results yet, but the initial report suggests that Hayden has suffered some cognitive damage that can be overcome with some work and effort. Overall, she is in great shape considering what her body and mind have been through.

When we got to Duke, Dr. Kurtzberg asked us to speak with a reporter who was doing a story on the cord blood bank. Dr. K and Hayden are going to be featured on the North Carolina PBS show, "North Carolina Now," on December 19th at 7:30. This was a great thing for two reasons. First, they wanted to film our appointment with Dr. K, so we got to be examined early in the day and were able to get out of there early! More importantly, we got to hear Hayden describe what the last year was like for her. Obviously I have no idea how they will edit it, but she was fantastic. I won't try to paraphrase her, but I hope you can all tune in (at least those of you in NC) to hear her talk about her experience.

My Auntie Ella Chatterjee (not really an aunt by blood, but the woman who was really my second mom) came to Duke last year to build gingerbread houses with Hayden and some of the other children. She spent time with Ryan Smedley's mom, Kim, and brothers. As many of you know, Ryan passed away shortly after Christmas last year. Ryan's family wanted Ella to come back to Duke this year to build another gingerbread village with the children on the floor. Hayden was so excited about it, because it meant so much to her and she saw how much the other children loved it. When she found out that Dr. K had ruled it out, she was very upset. During her appointment, she asked Dr. K about it. Dr. K explained that there was a risk of the kids sharing germs by touching and sharing the candy. But Hayden refused to let it end there. She kept arguing with Dr. K, until she relented and agreed to allow Ella and Kim to do the gingerbread village with certain precautions. At the end of the negotiation, Dr. K noted wryly, "I know which side of the family that comes from."

Everything else in Hayden's report was great. She is now only on three medicines, and is able to go back to school in January. We are so excited for her to resume a normal childhood.

I mentioned earlier that we had some sad news. Our dog Pasha, who Natalie and I have had for thirteen years started getting very sick again. We knew she had cancer in her liver, but she had already outlived their one month survival prognosis by about nine months. But she started getting very lethargic, was barely eating, and her stomach started to distend. Natalie took her to the vet, and we found out she had gone into liver failure. They recommended that we put her to sleep immediately. Last Tuesday night I took her to the vet and said goodbye to her. Everyone was heartbroken. And we still are. She was such a great companion, and was a great source of happiness for us through so many hard times.

Even though she cannot ever be replaced, we did finally come through on our promise to get Hayden a kitten. Natalie went out of town for a little vacation for the first time since Hayden got sick. And while she was gone, me and the girls got a beautiful little kitten for Hayden. You may not remember this, but Natalie hates cats. But when Hayden first got sick, Natalie promised her that once she got better she could have a kitten. And Dr. K just gave us the green light. Snowflake is a sweet, loving, playful kitty, and even Natalie has fallen in love with her. But as I said, she is no replacement for Pasha. Today in the car on the way back from North Carolina Izzy was holding her (as she always seems to be doing), and said, "Mommy, if I close my eyes and pet her, it feels like I'm petting Pasha." As with so much we've been through in the last year, the addition of Snowflake to the family is bittersweet.

The last time I made a journal entry I alluded to a surprise. Sorry it's taken me so long to get around to it, but here it is: Hayden is going to be the 2006 Girl of the Year for the National Capital Area Chapter of the Leukemia and Lymphoma Society. This means that she is going to serve as the inspiration for the Man and Woman of the Year fundraising campaign. We are so excited to be involved in this, and we think this is going to be a great opportunity for her to gain her voice and her self-confidence. At the same time we will be able to help this fantastic organization fulfill its goal of finding cures for leukemia and lymphoma.

The coming out event is tomorrow in Georgetown. Although Hayden has not yet decided whether she will speak, Jordan has decided she will give a speech. Buckle your seatbelts, we'll tell you how it goes!

Check out the link below to Dr. Kurtzberg, Hayden's doctor at Duke. She was recently given the Childrens Miracle Achievement Award.

Thursday, November 3, 2005 8:08 PM CST

Congratulations and thanks to Peggy Hanna and her Team in Training! They all successfully completed the Marine Corps Marathon in support of Hayden and the Leukemia and Lymphoma Society. The D.C. Chapter of Team in Training raised close to $700,000 for the Leukemia and Lymphoma society. We are so happy for Peggy and proud of her--she ran the marathon in less than four and a half hours!

We all went out to watch her, and Hayden cheered her on at the 13 mile mark and the finish line. It was really inspiring to see all of the runners in the Team In Training shirts--and Hayden yelled for everyone one of them!

Hayden is doing great, and we are getting ready for her one year appointment. She is excited about going back to school, but also pretty nervous. We are meeting with school officials to discuss accommodations she will need. Unfortunately, the attitude of the school has been anything but encouraging. I am quite concerned that they believe that just because Hayden looks ok, that she is. But thanks to a great event sponsored by the Leukemia and Lymphoma Society, we were exposed to the late effects studies that show that the radiation and chemotherapy, together with the psychological trauma of a transplant, are potentially very harmful to a child's cognitive development. Of course this is not widely know, and people from the school have told us that Hayden just needs to be treated like every other kid so she can adjust quicker.

Of course this is contrary to everything the experts say. Even though Hayden is an intelligent child, she will not be able to meet her full potential absent special accommodations due to calcification in her brain and impairment of the development of certain neuro-pathways. For example, her functional memory is much worse than it ever was, and her processing speed has been impaired. This means it can take her three hours to do math homework another child twenty minutes to complete.

Despite our concern, we are hopeful that the school will listen to us at the meeting with open minds. Aside from these misinformed comments, we know that they really are great educators who want to do the best for all the children. Of course we'll try to keep everyone posted on what is happening with this process. It is a real learning experience for us, and we are relying on the advice and knowledge of other families who have confronted the same problems with schools that don't understand the cognitive effects of cancer treatment.

Thanks to everyone for their support for Hayden and Peggy in the two recent Leukemia and Lymphoma society events. As we'll explain later, we are about to become much more involved in the L&LS.

Wednesday, October 19, 2005 5:12 PM CDT

Leukemia has claimed yet one more precious child. Dana, Hayden's friend from Duke, passed away early Sunday morning just 2 days after her 1 year transplant anniversary. Dana was a wonderful inspiration to Hayden! We have added a link to her webpage below. Please keep Dana and her family in your hearts and prayers during this impossible time. (Hassan and I have chosen to NOT share this heartbreaking information with Hayden at this time.)

Monday, October 17, 2005 11:06 AM CDT

Thanks so much to all of you who came out for the Light the Night event. Hayden had a great time, and was overwhelmed by the turnout, especially in light of the weather. She saw so many old friends, and I was shocked at how well she remembered everyone. It really did her a world of good to see how many people out there have been supporting her and her family. Sometimes her battle seems so lonely and solitary to her, and she feels like people may not understand how hard things still are for her now. And seeing so many people expressing their love for her gave her a lift, and reminded her that we are all in this together, and that our friends, family, neighbors, and even perfect strangers, have been behind her the whole way.

You guys are terrific, and it was great seeing you. For those of you who couldn't make it, but have been with us for this journey, thanks again for everything. You were well-represented by our mutual friends and neighbors!

On another note, I understand that Danny promised Jay to bring a NC pig-picking to Maryland. And Jay promised to supply the beer. Come spring-time, I'm holding them to their word, and we're going to have another big-time celebration--North Carolina style!

Friday, October 7, 2005 6:27 PM CDT

OK guys, it looks like a good possibility of another night of bad weather for Light the Night. But because the Leukemia and Lymphoma Society knows that its supporters are folks who are not daunted or intimidated by forces of nature, there is no rain date. Rain or shine, we are walking tomorrow--Hayden, and everyone of her friends and family who are able!

So bundle up, bring rain gear, grab a flask, and come on out. We are planning to meet at Hunter Ruderman's (Hunter's Heroes) tent, so come in your bright red slicker (Hayden's favorite color of the week) and be ready for some wet and wild celebrating. Obviously things could be better, but isn't that really the point? You guys have all dealt with much more than a little rain, and I hope that you will shrug it off just like you did all of the other inconveniences you suffered to support Hayden.

We can't wait to see you--please dress warmly!

We also ask that you please keep Clare's family in your prayers. A sweet 7-year old angel who lost the battle to leukemia this past week. Her memorial service will be held Saturday morning. We have added a link to Clare's website below.

Tuesday, September 20, 2005 6:59 PM CDT

I just wanted to add a little addendum to my pitch for the Leukemia and Lymphoma Society Light the Night fundraiser.

It turns out that the Leukemia and Lymphoma Society is actually giving large sums of money to provide care for the thousands of blood cancer patients who lost health care as a result of Hurricane Katrina. (See article and link to article below) So by contributing to the Light the Night fundraiser, you'll be doing doubly good work!

So please think about donating anything you can afford in Hayden's name to this very worthwhile charity. Thanks again, and we hope to see you all on October 8th.

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The Society Has Established a Communications Plan for Displaced Patients and Also Will Dedicate Funding from its Campaigns to Help Rebuild Healthcare Facilities

WHITE PLAINS, NY- The Leukemia & Lymphoma Society has announced several initiatives to help address the long- and short-term needs of blood cancer patients in areas affected by Hurricane Katrina. These initiatives will help ensure that cancer patients in these areas will continue to receive the vital healthcare services they need during this crisis and beyond.

The many thousands of cancer patients in the Gulf Coast region who have been displaced by Hurricane Katrina may have trouble over the coming weeks getting access to the cancer treatment they need. To ensure that these patients, many of whom are in need of acute care, do not have their treatments interrupted, the Society is reaching out to treatment facilities in the surrounding region to find out which ones are able to help displaced patients from the evacuated areas.

Patients are urged to contact the Society's Information Resource Center (IRC) at (800) 955-4572 to receive referrals to treatment facilities in the areas to which they have relocated. Specialists in the IRC can also answer questions about patients' eligibility for financial aid offered by the Society.

In order to help meet the critical need to restore health care to the communities ravaged by the hurricane, the Society will commit $1 million to help get blood cancer treatment centers and patient support services in the devastated areas up and running again. The organization will carry out this commitment through two of its major fundraising campaigns: a half-million dollars from the 2005 Light The Night� Walk and a half-million dollars from this year's School & YouthSM Programs.

The Society will also provide support to overburdened cancer centers in Texas that are caring for patients displaced by the hurricane. Light The Night 2005 campaigns in Society chapters in Texas will designate 30 cents of every dollar raised to support local treatment centers.

Light The Night Walk is the Society's annual fundraising walk, which takes place in the fall in communities throughout the United States and Canada, to celebrate and commemorate people who have been touched by cancer. School & Youth Programs are designed to help students learn the value of community services while raising funds to support the Society's mission: Cure leukemia, lymphoma Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society, headquartered in White Plains, NY, with 66 chapters in the United States and Canada, is the world's largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, the Society has invested more than $424 million in research specifically targeting leukemia, lymphoma and myeloma. Last year alone, the Society made 2.5 million contacts with patients, caregivers and healthcare professionals.

For more information about blood cancer, visit www.LLS.org or call the Society's Information Resource Center (IRC), a call center staffed by master's level social workers, nurses and health educators who provide information, support and resources to patients and their families and caregivers. IRC information specialists are available at (800) 955-4572, Monday through Friday, 9 a.m. to 6 p.m. ET.

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Wednesday, September 14, 2005 8:21 PM CDT

Hayden had her appointment with Dr. Shad today. She is doing great, and she is weaning off of her cyclosporin nicely. She is now only taking half the dose she was taking before we started weaning her. In addition, her magnesium and potassium levels started to go up. This is because the cyclosporin depletes both in the body. So she is now able to reduce her magnesium and potassium supplements.

She's feeling great, and having a great time in school with Ms. Roffman. She had her first soccer game this weekend. It was pretty heart-breaking to see her struggling to run. But it was also great to see her struggling to run. I think it's hard on her to be so far behind her friends, but they were all so sweet to her. And so encouraging. I think Coach Sue, the other coaches (including our neighbor Patty's sister), and the children are making this a great experience for her. And Dr. K approves, so that's good enough for me.

On an unrelated subject, I am sure many if not all of you have opened your hearts and wallets to the victims of Hurricane Katrina. On Saturday and Sunday Hayden, Jordan, Izzy, Noah and Mitchell all raised over $180 selling lemonade and brownies in Capitol Hill--those folks on the Hill are all really thirsty and hungry from so much politicking, or very charitable. I am sure that in light of the kindness and generosity that you have all shown our family, that you must all be touched by the devastation of so many wonderful families in the Gulf states.

So we understand that many folks who visit our website may have pledged money to help Katrina's victims, and may not be in a position to contribute to the Leukemia and Lymphoma Society right now. But I still wanted to bring your attention to the Leukemia and Lymphoma Society's Light the Night event being held in Rockville Maryland on October 8th.

Julie Kinnon is leading the event and is trying to rally the troops for a great night out. Hayden was so upset she couldn't be there last year, and is really excited about seeing everyone out all at once. This will really be the first time she will be able to see so many of the great friends and family who have stood by her side in this brave fight of hers. So even if you've given all you've got this year, please come walk for Hayden and the other victims of leukemia and lymphoma.

I've put a link to the website with details on the walk below. Thanks a ton--we hope to see you all there!!

Monday, August 29, 2005 7:57 PM CDT

Today was a really big day for us.

Jordan started first grade. All summer (and most of last year when she was out of school), Jordan talked about wanting to ride her bike to school. She got a lock for her birthday. One of those cable locks with a combination at the end. She was so excited about getting to school and using her combination lock that I think she forgot she was going to school for the first time in almost a year--and that she was staying for a full day. We were a little late, and she rushed in without a chance to say bye or give us a kiss. One of those Kodak moments somehow gone slightly wrong. But I guess sometimes that's how life goes, huh?

Hayden also started school again with her tutor, Susan Roffman. She had a great time, and was in amazing spirits--full of energy. (Last night we went to Dr. Shad's house for a cook out. The kids loved it, especially the clown. Then afterwards we went to visit with Cinzia Bruno's family. Cinzia was at Georgetown the same time as Hayden, and also had AML. She is eleven years old, and is doing great, fortunately without requiring a transplant. All three of the girls had a great time playing with Cinzia and her older sister Francesca. And Natalie and I were treated to some fantastic Italian home cooking by Joe.)

After school today we had an appointment with Jordan's new pediatrician, Dr. Peebles. We loved her old doctor, but the practice was just too big and rushed. And Jordan's had some real difficulities dealing with everything that's happened to her family over the last year, so we wanted to see Dr. Peebles since he is well-known for his attention to his patients' behavioral and developmental growth. He trained with T. Berry Brazelton, who wrote a great book called Touch Points. He was fantastic. We spent over an hour with him, and he talked to us about how we can help Jordan with her anger and feelings of jealously and insecurity. All in all, he says Jordan is doing great, and summed it all up by saying that she is "cool." With that, he convinced us beyond all doubt that he has the kind of insight and perceptiveness that will serve us well with all of our daughters. And to top it all off, he's also an Oncologist.

While we were seeing Dr. Peebles, we got a call from Sue, the Nurse Practioner at Duke, with results from Hayden's chimerism studies. Natalie came back in crying, and I freaked out. But as she reminded me afterwards, she always cries when we get the results of the chimerism studies, which have always been positive. Today was no exception. Hayden is 100onor cells.

We celebrated by having dinner at Tommy Joe's, Alan's restaurant. The girls had a blast playing in the new sandy "beach" area.

All in all, today was just a great day. The kind of day that makes you happy to be alive. If you haven't already done it, I'd recommend that you give someone you love a big hug and tell them how much you love them. It really feels good!

Wednesday, August 24, 2005 6:51 PM CDT

We just got back from Durham this afternoon. We had a great time in North Carolina, and Hayden got an excellent report from Dr. Kurtzberg for her nine month examination.

Everything looks great so far, and we are hoping for more good news in the next few weeks when we get her chimerism test results. We are hoping that the test will show that her blood cells are male, meaning that they were created by a marrow that grew from the donor stem cells Hayden received through her cord blood transplant. The last three times this test was done, it showed that 100f her cells come from the donor. This is what you want, and any indication that her old marrow is still making female blood cells is very grave.

(We have posted a link to an interesting article on chimerism, which suggests that transplanted stem cells can actually generate cells in other organs.)

Hayden's pulmonary functioning was great. She blew off the charts, and had some fun doing it. When we were at Durham her functioning was not so great, and it is pretty clear now that it is the result of the flu. She still has some thickening of the muscles in her heart, but this is normal and will reverse itself when she stops taking her immunosuppressant medication, cyclosporin.

Hayden actually grew a full inch from her last appointment. This is the first she has grown since she was at Duke (and possibly at Georgetown, but we need to check this). She also weighed 21 kgs., her weight while in Durham was about 18.9 kgs. The chemotherapy and radiation treatments usually prevent any growth at all for the first year after transplant. So Dr. K was very pleased about this growth. But we won't know for another four years whether she will grow on her own, or will need help from growth hormones.

Her white count and platelets are also down a little bit. Her white count was 3.8, which is the low end of the parameters. This is good, but is at the lowest point since May. Her platelets are at 120, which is also good. But the count went as high as 180, and has been steadily drifting down. Dr. K believes this is just Hayden's normal range, and that the higher elevations were anomolies caused by infections or other natural responses to other events. In addition, the test supposedly has a high margin of error (approaching 20 points according to Dr. K). So she is not concerned about either her white count or her platelets. Of course that doesn't mean we don't worry. Especially Natalie. And in light of her incredibly acute sense of what is going on with Hayden's treatment, I can't easily dismiss her instincts. It is really so hard to tell when we are worrying irrationally, because that's what parents sometimes do, or if our worries are justified. Most of the time, everything turns out ok and our worst fears are never realized. But as we've learned, sometimes our concerns are dead-on and deserve respect and immediate attention. It's a real tough balance to try not to worry yourself to death, and to stay vigilant at the same time.

But at this point, everything really seems to be going great for Hayden. Dr. K is going to let us start weaning her cyclosporin, which will allow her immune system to start working at full speed. If everything goes well, and Hayden doesn't experience any Graft Versus Host disease, the weaning could take as little as six weaks. Once she is weaned off of the cyclosporin, her need for other medications (like potassium, magnesium oxide, flagel, Vfend, and acyclovir) will decrease.

And hopefully by about December or January she'll be able to return to school. We were basically expecting that she wouldn't be able to go back to school until next semester, but we were still holding out some small hope. All things considered, Hayden is going to be in much better position next semester, when her immune system is working better.

Hayden also got to see her buddy, Allison, who she beat relentlessly at UNO (although Allison snuck in one victory). She also saw her primary nurse Andrea. Andrea is doing great and back in her role as a nurse on the transplant floor after an experiment in another position. We are so glad she is back where she can provide the excellent care to other children that she provided Hayden. Hayden also saw her crazy teachers, Marhall and Elaine. Hayden was so excited to see both of these great educators.

It was very weird being back at Duke. These and other fantastic people became our friends, and our entire lives revolved around the hospital for months. Walking through the halls from appointment to appointment, I was flooded with flashbacks to moments of time when Hayden was in the hospital. The surge of feelings was almost overpowering at times. Part fear, and part hope. And other feelings so intense that you could almost touch them.

But now it's great to be home. Jordan starts first grade soon, and Izzy goes to nursery school for the first time. Hayden's tutor will begin coming again, and we are looking forward to a beautiful fall--my favorite season of all.

Please keep Dana in your prayers, and support our friend Peggy in her Team in Training fund raiser for the Leukemia and Lymphoma Society. Thanks to everyone for their continued love and kindness.

Hassan, Natalie, Hayden, Jordan, and Isabella

Thursday, August 4, 2005 8:03 PM CDT

Dr. Shad, our security blanket, is finally back from Pakistan. We saw her on Wednesday, and she gave Hayden an excellent report. Her platelets have dropped a bit, but are still in a solid range. Her cyclosporin levels seem to be at a decent level, although it is really hard to tell since Duke and Georgetown use different assays to measure the level. And for some inexplicable reason (or at least a reason that I haven't been able to grasp) there is no way to convert the results of the Georgetown test to the units of measurement used in the Duke test. It seems to me that if both tests are accurate reflections of the level of cyclosporin in her body, there must be a simple formula for converting one result to the other. Just like converting farenheit to celcius. But apparently I'm wrong. If any of you scientists out there can posit an explanation for this, I'd love hear your theories.

In any event, Hayden does not have any serious graft v. host disease, which is what the cyclosporin is designed to prevent. Too much cyclosporin can of course cause other problems. Anyway, we think her levels are ok, but its really a guessing game, as you can see.

Everything else looks good. And Hayden has had a great week. All the kids are looking forward to seeing Nana and Baba this weekend. I hear Nana has some serious baking planned.

Take care, and please keep Dana in your thoughts and prayers (notwithstanding my somewhat bizarre and bitter last journal entry). If you want to contribute to Peggy's effort to raise money for the Leukemia and Lymphoma Society, the link to her website is below.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Thursday, July 28, 2005 10:06 AM CDT

Dana. Dana. How could this happen? She was transplanted right before Hayden. 100 percent donor cells at her six month appointment. Three years of chemotherapy. Relapse. Massive radiation. Cord blood transplant. Nine months of feeling like things were going to be ok. And now a relapse. I can't tell you how I feel right now, because I don't really know how I feel. I think mostly I'm angry. And I can't even begin to imagine what her parents are going through. They are tough, and I know they'll rise to the challenge for the sake of their family. But at some point, is the world asking too much of them? How much weight can they bear on their shoulders? I'd ask you to pray for Dana and her family, but I can't bring myself to do it. It seems so pointless.

We prayed for Grant, a happy little boy taken away from his parents for no reason. And Ryan, whose family loved him so much. And Varun, whose parents waited for years to bring him into this world, only to have him taken away from them. And we prayed for Sarah, who was taken away from her parents after a transplant--parents who had just recently lost their older daughter to a random mistake by doctors in Scotland. And Paris, who shared his love of art and winning smile with everyone he met. So for now, I'm not going to ask you to pray.

Instead, I'm going to ask you to do something more concrete. Our friend Peggy Hanna is running in the Marine Corps marathon to raise money for the Leukemia and Lymphoma Society. We've asked you many times before for your financial support, and understand that many of you may not be able to keep giving. But if you can, please support her. Money that is raised goes to scientific research, and efforts to support victims of leukemia and lymphoma. You can visit her website at www.active.com/donate/tntnca04/PHanna2005 (I'll also paste a link below).

Will this help? Yes. It will. Together, we can make a difference. We can pray, meditate, and send positive thoughts. And that may help too. But right now, science is what is keeping Hayden alive. And science is what will save children in the future. So that's where I'm putting my faith right now. Let's keep up the fight for Dana, Hayden, and all of the other children who need the benefit of the most advanced science to save their lives. Would you ever imagine that the stem cells from an umbilical cord could cure cancer? That is only the beginning.

I apologize for this somewhat harsh journal entry. I've always tried to be honest in my words to all of you, and I can't stop now. I am incredibly angry, and feeling very helpless. Some days you wake up and can't believe how beautiful the world is. Other days, you wake up and can't believe how horribly ugly it is. Hayden is doing pretty well right now, but I am too scared to be happy. I am too scared to do much of anything right now. But it does feel right to ask that you help Peggy with her effort to help cancer victims. At least that is something concrete we can do.

Monday, July 11, 2005 7:31 PM CDT

Fortunately, our lives have been relatively uneventful. Hayden's feeling better everyday, and we are gradually adjusting to have normal lives. Dr. Shad is in Pakistan for a month, and we are seeing her colleague, Amal Abougosh. She's a transplanter and a good doctor. But we miss the certainty and continuity of having Dr. Shad around. We've had some problems adjusting Hayden's cyclosporin level, and she has a slight cold. But Dr. K is incredibly accessible, and is following Hayden very closely.

As we mentioned in earlier entries, Jordan and Isabella went to the beach with their cousins, Mama Kik, Aunt Paige and Uncle Charles. They had a blast! Of course we were glad to have them back. (Tomorrow is Uncle Charles' birthday. You didn't hear it from me, but I understand he's turning forty. If you ask me, he doesn't look a day over 39.)

Jordan came back swimming like a fish. Now, back at home, she is jamming on her electric guitar and enjoying her summer. Izzy looks like the Coppertone baby, and loves dumping water on her face, dunking her head in the tub, and getting otherwise wet on all possible occasions. When Hayden got a little electric keyboard (she just started piano lessons), Izzy threw a fit for her own piano. We dug Jordie's old "baby grand" out of storage, and Izzy bangs away on it non-stop. She is such an incredible character. Natalie nailed it on the head when she said she is just like Scrappy Doo. As we all know, Scrappy really ruined the cartoon (and makes almost no appearance in the new episodes), but he had quite a personality. She's a real lovey dovey one minute, and jumping up and down like a maniac the next. Always telling jokes, telling people to "Hang Loose, Dude," and complaining that the doctors who took her blood (we took her in for some tests) are annoying.

Our great friend and next door neighbor, Alan Pohoryles, is just out of the hospital. He spent several days in-patient after some planned reconstructive surgery on his knee. The girls were all excited to see him home, and just delivered their get well cards to him. Hayden showed a particular kind of concern about Alan while he was in the hospital. She knows what it's like, and appreciates how scary it can be. He looks great, and will hopefully back on his feet soon.

We had a great Independence Day, watching the fireworks in Rockville. The kids were all exhausted, but really enjoyed the show. We hope your summers are all going great and you are managing to stay cool--not an easy feat around here.

With love and gratitude,

Hassan, Natalie, Hayden and Jordan

Sunday, June 26, 2005 9:14 PM CDT

Today is the end of a really long week. Hayden got really sick on Wednesday and ended up back in the Hospital. I was out of town for work, and when I made it back on Thursday, she was in the PICU.

It turns out that she had another GI infection caused by a bacteria called CDiff. Because of her immunocompromised state, her body is going to remain vulnerable to this very common (and ususally harmless) bacteria for some time. She has recovered nicely, and made it home tonight. She has rebounded much quicker than the last time she got sick, and seems to be feeling pretty good.

Jordan and Isabella are at the beach for the week with their cousins, Aunt Paige, Uncle Charles, Poppy and Mama Kik. Jordan was really worried about Hayden, and was very excited when Hayden called her to tell her she was home. Jordan is such an incredible little girl, and she's been through so much. I worry constantly about whether we give her the time, attention, and patience that she really needs. On the other hand, she's pretty good about grabbing the attention she needs on her own! She's a hip-hop loving tomboy, and is already cooler at six years old than I ever was--she clearly got that gene from her mother. Even though we miss her and Izzy, they have been really bored lately. Without school or camp or other activities (which we had to opt out of to limit exposure to infectious diseases, etc.) they really get restless. And we don't want them to start resenting Hayden for this. They loved the time they had at the beach when we went for a few days around Hayden's 6 month appointment. So we know they'll have a great time with their cousins and grandparents.

We'll try to keep you posted, but in the meantime, everyone is doing well after another little incident. We still feel incredibly blessed about our good fortune so far, and we are confident that Hayden is going to continue to recover strongly. We expect minor setbacks, and we try to be prepared for more serious ones. In the meantime, we just keep on loving what we have--a life full of love and beauty.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Monday, June 20, 2005 9:17 AM CDT

I guess we are a little behind in updating the website - always remember that no news is good news! Hayden is feeling wonderful and her doctors agree that her labs are looking great too. We have been very busy since our last update.

We were at Duke for Hayden's 6 month studies at the beginning of June and Dr. K could not have been happier. All of her studies came back with positive results. One of the most important tests is her donor cell tests which takes 1 week for the results. We got the news while we were at the beach and YES she is indeed 100onor cells. This is the best news that we could hope for. She also had immune function tests performed and we will not get the results of those for 1 month. This determines how her immune system (the part that protects her against viruses and fungus) is functioning. She did not make a lot of changes in what Hayden can and can't do so we still have to take the same precautions as before.

After leaving Duke, we headed down to Topsail Beach for the remainder of the week and weekend for a much-needed vacation. Hayden was very excited about the trip so of course we were too. We spent time on the beach building sand castles and playing in the water. We also spent a good bit of time playing inside - starting and completeing a 1000 piece butterfly puzzle that her friend Ramsay gave her. We actually managed to take the girls out on a boat to go tubing thanks to Maria Minchew and her husband Todd. We owe this wonderful vacation to them since they gave us their cottage to use for the week. Their hospitality was simply amazing!!! Our girls had a great time!!! We also celebrated Isabella's 3rd birthday. We had a small party with lots of cake and presents. This must have been the best vacation we have ever had because we were able to appreciate so many things that we had taken for granted in past. Thanks a lot Todd and Maria!

Just before our trip to Duke our little friend Varun earned his angel wings. We were deeply saddened by this news and hope that you will keep his parents in your prayers. Hassan was able to attend the service which was held while we were in NC. We continue to think of Varun's family as they go through this horribly difficult time.

Today marks the 200th day since Hayden's transplant and not a day goes by that we don't stop and think where we have been, how far we have come and how happy we are to have our wonderful family. Once again thanks for all of the continued prayers and support for our little Hayden.

Love,
Natalie

Monday, June 20, 2005 9:17 AM CDT

Monday, May 30, 2005 7:53 PM CDT

Hayden had her lines taken out and her port placed last Monday without incident. Dr. Shahin and the nurses at Georgetown made Hayden (and us) all feel very comfortable. Hayden had some pain, nausea, and lethargy for a few days, but is now doing great. We had a great weekend, and everyday is better than the last. We are headed to Duke next week for Hayden's six month appointment. She was transplanted six months ago today. It's hard to believe we've come this far. Hayden is asking to do things she can't do yet (like today she wanted to go to Blockbuster to pick out movies), and it was without any hesitation that I told her that it would be really soon before she could do stuff like that. Just another six months. Obviously the next six months will not be easy, but having six months in the rear-view mirror makes it all seem more manageable.

We continue to check in on little Varun, who was transplanted at the same time as Hayden, and was discharged on the same day. The sweet little guy is having quite a battle. Please keep him and his kind parents in your thoughts and prayers.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan, and Isabella

Saturday, May 21, 2005 8:03 PM CDT

After yesterdays's downpour, we were really nervous it would rain again today. We had planned for Hayden to have a little birthday party with a few friends, and we were at the mercy of mother nature, since Hayden can't be indoors with so many children. We woke up this morning to blue skies, and haven't stopped yet.

Me and Hayden made pancakes and bacon for breakfast. She can really flip a pancake! After we pigged out, we started getting ready for the party. Me and Hayden made her cake--double layer with chocolate icing. Of course, I screwed it all up by putting too much batter in the cake pans. (We were wishing grandma Britt was there to help!) Hayden teased me to death, telling me I ruined her cake. Of course enough icing will make any cake look good. So I thought I had gotten away with one. But when Natalie got back from picking up party favors, Hayden ratted me out! As soon as she came in, Hayden said, "Guess what Mommy. Daddy ruined the cake!" Well, one good turn deserves another, so I had to rat her out too. She gave Izzy the green food coloring, which Izzy instantly spread all over the carpet. So I had to tell Mommy on her too. I figured if I was gonna be in trouble, I was gonna keep her there with me . . .

Anyway, we had a great day. Several of her friends met us for dinner at 5:00 at Mama Lucia's. Hayden hadn't seen many of these friends in over 8 months. After just a few awkward moments, they got right back into the swing of things. We had a great dinner and then went back to the house where the kids played on the swing set, ate the cake (nobody noticed the extra icing where the bottom layer was missing!), beat the hell out of a Pinata, and had an all around great time.

One of Hayden's very best friends, Kelly Morrison, got to spend the night. They did crafts together, and are now on the couch watching Jungle Book 2. It's been a great day for Hayden, and in turn for all of us as well.

Hayden is still in good shape. She's going in for surgery on Monday to have her lines taken out and replaced with a port. She's very excited, but in light of what happened the last two times she had surgery, we are quite anxious about it. Please think of her Monday morning. We'll post an update as soon as possible after the surgery. Also, please keep little Varun in your thoughts and prayers. He's had a tough go of it, with lots of ups and downs. But he's a real fighter, and we're hoping to see him out of the PICU real soon. His website is www2.caringbridge.org/nh/varun Please visit and let his parents know you are thinking about their beautiful son.

Thursday, May 12, 2005 9:46 PM CDT

Yesterday may have been the greatest day of my life. I picked up Hayden from the hospital at around 5:30, after a few hours in the office. (Being back at work itself is fantastic. I've missed my practice and my partners, and am really enjoying being back, even though it is still on a limited basis.)

I parked at the traffic circle and waited for Natalie and Hayden to come out of the hospital. It was so great to see Hayden WALKING out of the hospital. Even though she had her mask on, I could see her giant grin in her beautiful brown eyes. She didn't stop smiling, laughing, singing or talking all the way home.

Her sisters stormed the car as we pulled up to the house. They were all so excited to see each other. Hayden wanted Tadig and chicken kabobs for dinner. Tadig is the crunchy, sweet buttery rice at the bottom of the pan when you make rice the Persian way. This was a regular meal for us before all of this happened, and Hayden really missed it. I cooked the kabobs out on the grill while Hayden, Jordan and Isabella played in the backyard together for the first time in six months. First Hayden and Izzy played on the tire swing. Even though Hayden loves to go fast, I asked her to go slow so she wouldn't upset her stomach and throw up. It was so cute to see her interacting and playing with Isabella. Even though they've been together for several months, Hayden's energy level and activity interests have allowed for few opportunities for them to play together. I watched with fear and excitement.

And when Hayden jumped on the big swing and started pumping away, with Jordan at her side, I just lost it. Maybe there was a part of me that feared I would never see her playing in her own yard with her sisters like that again. Being home with her on such a beautiful night, watching her play with so much excitement was incomparable. For me, it was as exciting a moment as when the children were born, or when I first kissed Natalie overlooking the lights of LA on Mulholland drive fourteen years ago. A sweet, sweet moment I will never forget.

And it only got better. We all sat down at our dining room table to enjoy our Persian feast. Jordan wanted to know where I learned to make Tadig, and Hayden immediately assured her that Nana taught me the fine art of making a perfectly golden crust. And when Jordan asked who taught me how to make the chicken, I had to think a minute. And then I thought back to an evening over ten years ago when I was visiting with my Ameh (Aunt) Manijeh, Jeffrey and my two little cousins (the now quite manly Walker and William). We hadn't been together for years, and cooked out in their yard on a beautiful night, and shared a great meal of chicken kabob. Until then I had no idea that yogurt, lemon juice and olive oil were the secret to a delicious marinade. And as my whole family was together at home enjoying the same great meal, I got a warm chill thinking about the happy dinner with my beautiful aunt and her amazing family. If she were still with us, she would be so proud of Hayden and all that she has done. And as I revelled in the moment of happiness and relief, Manijeh was with me, reminding through her example that life is precious, wonderful and short.

In forty minutes Hayden will be seven years old. She spent almost a seventh of those years in treatment. And she has suffered greatly. But we have had moments that are beyond compare. Natalie and I have lived more in the last year than all of our years before. And our daughters have seen the love of family, friends and community that will go with them for their entire lives. Despite all of that, I wouldn't be one bit disappointed if the next year of her life isn't quite so eventful!!

Hayppy Birthday Hayden!! We love you!

Please remember all of the kids and families on 5200 and in the PICU fighting for their lives. These families really need your prayers especially Varun who has just recently gone back to the PICU. You can visit Varun's website at www2.caringbridge.org/nh/varun

Tuesday, May 10, 2005 5:24 PM CDT

The past week was anything but what we expected. We were all so excited about our homecoming, especially Hayden. And everything was going great as we headed out of town on Thursday morning. I had the three kids in the car with me and Natalie was following in another car (loaded down with some of our belongings we accumulated in Durham). The kids were all laughing, and Hayden was singing along to the music playing in the car. As we arrived in Richmond, we stopped at McDonalds to switch cars and grab some food for the kids.

About twenty minutes later Natalie unexpectedly exited the freeway, and went onto a side street. I pulled up behind her and got out of the car. Natalie rushed to the back seat, where she was helping Hayden, who was throwing up uncontrollably.

We had no idea what was going on. We thought maybe it was car-sickness, since she often got car-sick. It was also similar to what happened when her cortisol level got low. She had to use the bathroom urgently, and we were parked near a Mennonite church. We pulled into the church and knocked on the door. Luckily the pastor was there, and he let us take sanctuary in his church while we tried to make Hayden more comfortable. After about two hours (and conversations with Hayden's doctors in D.C. and North Carolina) we headed for home. We gave Hayden a stress dose of hydrocortizone, which worked the last time her corisol level got really low. Hayden fell asleep in the back of the car and we made it home about two hours later.

When I picked her up from her seat, she was limp and warm with fever. We immediately put her back in the car, left Jordan and Izzy with Vicki, and rushed to Georgetown--at least as much as you can rush at 6:00 in D.C. Dr. Shad called me and told me that time was of the essence since Hayden had broken a fever in spite of the steroids we gave her. I must have run about 10 stoplights and stop signs after speaking with her.

We went straight to the transplant floor, where they gave Hayden more steroids, fluids, and put her on several anti-biotics. About two hours later, her blood pressure started to drop dramatically. Dr. Shad tried to pump up the fluids to increase her blood pressure, but it kept falling. The next thing we know we are taking a not so graceful trip to the ICU--Hayden in her bed, me pulling the blood pressure monitor, a resident pulling her IV pole, Natalie and a nurse pushing the bed, and Dr. Shad rushing alongside us. Unfortunately, Georgetown built its hospital in the middle ages. So the bed barely fit in the elevators, and we had to bang around the IV pole and blood pressure monitor, and squeeze in everybody on two separate elevators to get to the PICU. It's funny now, but at the time it was just horrifying. I could see from the resident's expression of panic (and the fact that he kept slamming the bed and the IV pole into the walls) that time was critical.

We finally made it to the ICU, where they pumped Hayden full of dopamine, which constricts the blood vessels and ultimately raises blood pressure. Hayden had gone into septic shock because of her infection. Fortunately, the antibiotics worked quickly, and her blood pressure stabilized after a few hours. Her temperature returned to normal, and the next day she was feeling quite good, all things considered.

Unfortunately, Hayden is still stuck in the hospital until tomorrow. In the meantime, we've had some adventures at home as well.

On Saturday James, Danny and I were moving furniture around and discovered a patch of mold in the basement. After further exploration, it turned out that a window we had purchased just a few years ago was leaking. As a result a whole wall in the basement was covered with black mold. Mold like this may be harmless to most people, but for Hayden it poses and incredible risk. We tore out the wall, tore out the carpet, and cleaned the entire area with bleach. We then shut off the a/c. Today, we cleaned the ducts and installed an new air conditioning system with an air filtration device. Dr. Kurtzberg is going to allow Hayden to return home tommorow, but she cannot go into the basement (where the playroom is located) for six months.

On the positive front, our friends in Bethesda threw an amazing party for us on Saturday. Thanks to Alan Pohoryles and Sue Soler, over 200 people enjoyed great food and drinks at Tommy Joe's. The auction was a lot of fun, and folks walked away with some pretty cool prizes. We were blown away by the generosity of the guests at the party, and those who contributed from afar. All in all, the event raised $32,000 for Hayden. Only through this generosity are we able to afford a new, safe air conditioning system for Hayden. Only through this generosity are we able to afford the medical treatment (including the costly dental care) not covered by insurance. We are absolutely overwhelmed and overjoyed by the generosity of our friends, family, neighbors, and even complete strangers, who have opened their hearts to Hayden and her family. As I said at the party, the material support is great (and needed) but it is not nearly as amazing as the emotional support and love that you have all give us.

Hayden's coming home tomorrow, and her birthday is Friday. We are sure that things are finally turning around. We'll let you know how it goes (Hayden wants cheescake!). With love and gratitude,

Hassan, Natalie, Hayden, Jordan, and Isabella

Saturday, May 7, 2005 10:26 AM CDT

The Zavareei's returned from Duke on Thursday and are now back home in Bethesda. Unfortunately, Hayden started a fever on the trip home and was admitted to Georgetown hospital Thursday evening. She has a treatable bacterial infection, clostridium difficile. It is very common in patients, such as Hayden, who have received broad-spectrum antibiotics for prolonged periods. She will need to be at Georgetown for a few more days.

Since they are still in the process of settling in at home and spending time with Hayden at the hospital, Natalie asked that I post this update on the site. I'm not as eloquent as Hassan or Natalie, so look for a return to the familiar (and better) style soon.

James Hanna

Wednesday, May 4, 2005 9:37 PM CDT

WE ARE GOING HOME!!!!!

We met with Dr. K on Tuesday and got the final go-ahead to return home. It has been a tough six months (about three more than we had hoped for) but we couldn't be happier with how Hayden is doing right now.

Her platelets are way, way up. And she appears to be doing pretty good with her white and red blood cell production. Her mouth pain is finally subsiding, and she is in a great mood most of the time.

We are all so thrilled to be heading home. We can't wait to see all of our friends and neighbors, especially the kids. So many new babies have been born, and we are excited to see how much the other children have grown since we last saw them.

Although we are excited to see everyone, and Hayden, Jordan and Izzy are chomping at the bit to see all their old buddies, we hope everyone will be understanding that we are still not out of the woods. Hayden's immune system is still very weak and immature. She cannot under any circumstances be exposed to children with colds or other illnesses, and most of her play with other kids will be limited to the outside, where there is less risk of exposure.

She still can't go inside public places, and Hayden isn't going to be able to go to school until the fall. We are also going to keep Jordan out for the remainder of the year to decrease the risk that she picks something up and brings it home with her.

Although Hayden is bursting at the seems to get her new kittens, we are on strict order not to get puppies or kittens until she is one year out, as they often carry diseases that could be devastating to Hayden.

We also learned that Hayden cannot under any circumstances be around children who just received (within 30 days) a live vaccine. These vaccines are usually given at the one-year appointment for infants, and a booster is given at the five-year appointment. So we ask all of our friends with kids to help us out on this. We hate to keep the kids from their friends, especially knowing that this whole situation has been very scary for many of them as they follow their friend's treatment. But we still have to keep Hayden's safety as the number one priority. So if we ever appear brusque and over the top (like taking a medical history and asking for you to complete a brief 20 page questionaire), please bear with us and do not take it personally. We have had to kick our own daughters out of the house for weeks when they got sick. Hopefully they'll forgive us in time!

Hopefully the weather will be nice and we'll be able to see everyone hanging out in the neighborhood. I am getting chills just thinking about it. Mingling with the neighbors in the Spring has always been one of my favorite things to do. Now, more than ever, this simple pleasure will have even more significance. We can't say enough how much we value and appreciate what our family, friends and neighbors have done for us. And we can't wait to spend some time seeing some of you again.

On that count, we hope to see many of you on Saturday night. We haven't quite worked out the babysitting schedule, but we both plan to be at our favorite bar, Tommy Joe's, to see everyone and celebrate Hayden's return. Thanks again to Alan and Sue for spear-heading this bash. They and others have put in huge amounts of effort and love into this event, and we can't wait to enjoy the great party they are preparing. We are so happy that we are going to be doing this under such positive circumstances.

Anyway, I'm starting to feel a little bit sappy so I better sign off. We have a big day tomorrow, and I cannot wait to get home!

Thanks to everyone for helping us get where we are today. We never stop marvelling at the support we have received.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Izzy

Friday, April 29, 2005 3:10 PM CDT

DAY 149

We met with Dr. K on Tuesday and the news is all good. Hayden's counts are still on the rise, and we are expecting to head home late next week. We are so elated! At the same time, we are a little overwhelmed with the normal stress of moving, together with anxiety over being so far away from Duke and the experts who have taken care of Hayden.

My mom is on her way to help us this weekend while we pack, and Aunt Kay came over on Wednesday to help us pack up a bit. Poppy is on his way back from Bethesda, where he just got done installing new windows in our house. We are doing this to stop the mold and mildew that we have had as a result of our old rotting windows. Like so many other things, that mildew and mold is quite dangerous to Hayden. Mama Kik is planning to come to Bethesda with us and stay for a week while we get settled in. Peggy Hanna has continued to move heaven and earth to get us situated, together with our great next door neighbor Alan Pohoryles. Alan is the owner of Tommy Joe's, the restaurant that is hosting the big event on Saturday. He and Sue Soler, together with a committee of amazing friends and neighbors have been working hard to make this a fantastic event. We are so excited about coming back, and having such a great opportunity to see so many friends all at once. We miss everyone so much!

The girls are all really excited about coming home, although I wonder whether Isabella even remembers that we ever had another home. Jordan has made a ton of friends in our neighborhood, and is going to miss seeing them and her cousins. Hayden, however, is not looking back. She just wants to be home again! We have been in communication with the parents of Dana, a little girl transplanted about the same time as Hayden at Duke. Dana just got home and her mom says it gave her a huge burst of energy just to be back home. We really are hoping for the same for Hayden.

Although she is recuperating from the surgery, she is still not where she was the day before the procedure. She is having stomach pain periodically, and her mouth is still very sore. On the other hand, her platelet counts have soared, and her red blood cell and white blood cell counts are on the rise. We hope that her energy will rise with it. And there is nothing better for the spirits than going home! With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Saturday, April 23, 2005 2:11 PM CDT

On Wednesday Hayden went to the hospital for her dental procedures. She was very brave as she received her platelet transfusion and waited for her surgery. We met with the dentist, and Natalie stressed to her that we wanted to do everything possible to save her teeth.

Although the affected teeth are only baby teeth, the radiation that Hayden received is certain to have an effect on her permanent teeth. In many cases, children don't grow any permanent teeth after such a dose of radiation. So the baby teeth are that much more precious. Not only may they serve as her only teeth for many, many years, but they must also stay in her jaw to prevent the bone from deteriorating. If the baby teeth fall out or are extracted, it is possible that there will not be sufficient bone to place implants when she is older.

So it is all a very delicate cycle that begins with placing a high priority on saving Hayden's baby teeth. Hayden's decay comes from months without brushing or flossing. Although she has done several rinses a day since she was diagnosed, we were told repeatedly by Dr. Shad at Georgetown, and Dr. Kurtzberg at Duke, that flossing and brushing could be fatal to Hayden. The bacteria in her mouth could easily be pushed into her blood system causing a massive infection and septic shock. So for months Natalie watched helplessly as Hayden's teeth decayed. And everytime she asked about it, the Doctors told us there was nothing that could be done, and that we needed to focus on the greater risks associated with taking measures to protect her teeth.

When we finally went to see the dentists supposedly trained in treating immunocompromised children, they had a totally different perspective. They said we should have been brusing and flossing all along. And they said that they had spoken with Kurtzberg about this on numerous occasions. And they wanted to immediately treat Hayden by either extracting or repairing Hayden's five damaged teeth.

When we told Kurtzberg that the DDS told us we should be flossing and brushing, she disagreed vehemently. But she agreed that general anesthesia in the OR was necessary to perform the treatment that was necessary for Hayden's teeth.

Natalie went back with her, and we waited in the surgery waiting room. The dentist called after about two hours to tell us they were done with her bottom teeth and were moving on to the upper teeth. Everything had gone well so far. But this was only one of five teeth, and she was already in surgery for two hours. After almost five hours, the dentist came out and told us that everything went "very well." They saved four of the teeth with root canals and stainless steel crowns. One tooth was so bad that it had to be extracted.

In addition, the intubation tube used for Hayden's anesthesia caused one of her front bottom teeth to become very lose resulting in a necessary extraction. A primary tooth that was not ever in any danger. We couldn't believe that after all the effort to save Hayden's damaged teeth they had managed to damage a perfectly healthy tooth.

We took Hayden home, and she was absolutely miserable. Her entire mouth ached, and her throat was sore from the anesthesia tube. Yesterday we brought her in to see the Nurse Practitioner, Sue Wood. Large areas of skin had been torn out of the back of her throat due to the intubation tube being in for so long and moved around so much during the procedure. And the clamps that were used in her mouth had gouged her gums in several places. Frankly, we are really disgusted with how she was treated. Simply because she was unconscious and unable to complain of pain, the dentist and anesthesiologist seemed completely careless about preventing minor injury to her mouth and throat. She is still in a great deal of pain, several days later.

In light of this, we have decided that Hayden will not have her port placed at Duke. Instead, we will go back home the first week of May. And we will have Dr. Shahin place her port. This was Hayden's second surgery at Duke, and the second time we have had problems. The first time they gave her an antibiotic that we told them she was allergic to. As a result, she ended up in the hospital with a fever for five days.

If there is a positive side to this, it is that we are now confident that we can come home soon. Hayden's counts are recovering nicely. She is still exhausted from the surgery. But hopefully she'll be back in good form soon.

On a less happy note, a child who was transplanted at the same time as Hayden, Varun Bhaskaran, is in the Intensive Care Unit. He was doing great, and Jordan, Isabella, and I saw him at the gardens on Sunday. He has contracted a very serious infection. His situation is very serious, but he is getting better. His website is www.caringbridge.com/nh/varun. His parents are wonderful people and he is the cutest little boy. Please visit his website and keep him in your thoughts and prayers. He is a real fighter and we know he is going to make it out of there soon.

Please remember to keep the families on 5200 and in the PICU in your prayers. We are preparing to come home and will let you know more as we are closer to that time.

Love,
Hassan, Natalie, Hayden, Jordan and Isabella

Monday, April 18, 2005 7:42 AM CDT

Another 2 weeks have passed and Hayden continues to improve everyday. We have spent a large part of the most recent days outside either playing, doing crafts in Hayden's recliner or going out to dinner (outside dining, of course). Once Dr. K gave us permission to go out to dinner, Hayden decided that we would go out almost every night. So we usually go to Cinelli's - a pizza place no doubt.

Hayden's counts have been relatively stable and we once again are starting to see signs of platelet recovery. Her white count has started to trend down a bit but Dr. K thinks this is still a result of the flu that she had a few weeks ago. They will give her a medicine to boost her white count if she falls below a certain level. This has not happened yet. Speaking of meds, she is off all of her IV meds and takes about 20 or so pills a day (all sizes). As always, she is a trooper with this!

Because she is no longer using her central lines on a regular basis they will be removed and she will have a port placed on the 25th. This will be done in the OR and is pretty routine but of course there are risks involved. Please keep us in your thoughts. We are hoping to come home soon after she has completely recovered from the procedure and they are certain that the port is working for us. Hopefully we will be home in the first few days of May. We are desperately trying to get Hayden home for her birthday on May 13! She is finally decided that she is ready to go home now.

Hayden developed a few cavities during the last 10 months because she has been unable to brush her teeth due to the risk of developing an infection. Dr. K still reccommends that we do not brush or even visit the DDS. But last week one of Haydens teeth started hurting pretty bad and so we went to see Dr. Keels (Pediatric Dentist specializing in immunocompromised patients and highly reccomomended by Dr. K) We found out that Hayden has several teeth that are going to need major work and that she could possibly lose them. This is especially difficult for me knowing what she will have to go through these procedures. Also, due to the radiation that she received there is a possibility that her permanent teeth will not develop. The DDS wants us to do these procedures under general anesthesia to make it easier on Hayden but I hate to see her under general 2 times in the next week. Its really hard to be a DDS right now. We have not made any definite decisions about this yet. She is at risk for infection either way - if she has the work done she could develop an infection and if she dosen't, the teeth could abcess. DECISIONS, DECISIONS, DECISIONS!!! In other words, this could delay us in getting back to Bethesda. Once again, keep us in your thoughts.

On a more positive note, we are very excited to say that we are pretty certain that we are going to have our old aupair, Andrea Paes da Silva, join our family again. She has been living with our friends James and Peggy Hanna for the last year or so. Andrea, James and Peggy have spent time in Durham with us helping us care for the kids. Because these guys are such dear friends and Andrea is such a wonderful person, they are willing to rearrange their lives so that Andrea can help us. We have come to the realization that she is the only person that can really help us right now. The kids adore her, she is an amazing person and a really hard worker. I am not sure how I could survive going back to Bethesda without her. I can't tell you how excited we are!!! Those of you that know her and have seen her with the girls know exactly what I am talking about.

Thats all I have to report now but we will keep you updated on our upcoming procedures. Please keep us in your thoughts and prayers. As always, thanks to all of our friends and family that give us the daily strength to face each day.

Love,
Natalie, Hassan and the girls

Tuesday, April 5, 2005 10:08 PM CDT

Hayden is finally recovering from the flu. It seems incomprehensible, but this flu really knocked her back several weeks. Dr. Kurtzberg said she is very lucky that she did as well as she did, and that many children end up back in the hospital from the flu. We've had lots of conversations with folks about Hayden, and many people seem surprised at the precautions we have to take to protect her from infection.

But the bottom line is that there are viruses, funguses, and bacteria that large portions of the population carry with absolutely no effect that can be transmitted to Hayden in the air and cause devastating effects. We are going to be vigilant about protecting her from this risk for the next year. It will take that long for her immune system to reach the level of a newborn child. Before that point, she cannot even be immunized from the diseases that infants are immunized against. Hayden will not be able to go to school for a year (from transplant). She will not be able to be in crowds. As our friends and family, we ask that you support us in this effort, and forgive us when we take precautions that may seem overboard or impolite. We just simply must put Hayden's safety above everything else. And we hope that you all understand that these precautions are not fanciful or extreme. They are absolutely necessary. Hayden is in a delicate position for some time to come, and we cannot let our guard down for one minute.

You will also soon see new pictures of Hayden. You and your kids will see that she has a great deal of hair on her face from the cyclosporine, and her face is bloated from the steroids. Hayden is not at all self-conscious about this. She understands that this is caused by the medications she is taking that are making her better. It may be harder for other children to understand this. We ask that you speak with your children about this and explain that Hayden looks different now, but that she will return to her normal physical appearance soon. More importantly, her personality is returning to normal, and her friends will find the same beautiful girl when they see her. But we want to make sure they are prepared for her physical appearance. Although she is not self-conscious about this now, we are afraid that comments from friends and family could change this.

But maybe not. She is so non-chalant about the whole thing. Nana was here with her for over a week and was remarking about how other kids wouldn't be able to take tens of massive pills at a time without complaining or flinching. Hayden told Nana without a hint of sadness or self-pity that, "They would if they had Cancer. You just have to do it to get better." Every now and then I tell her what a hero she is. How she has been through more in her six short years than most of us ever go through. She just absorbs it silently without comment. Just like so much she hears. I am overwhelmed with pride in her strength and determination. I always knew that I would learn many lessons from my children. But I never imagined that my six-year old would teach me so much about courage, strength and dignity. I only hope that I can have a fraction of the strength that she has. So far, she has had enough for all of us.

So what has been happening for the past week? Hayden appears to be doing great. Her blood counts are not rising, but they are holding their own. But her spirits are rising. When Nana was here, they baked Cannolis, biscotti, pizzelles, banana bread, Italian bread, and a birthday cake for her Aunt Paige. Natalie bought a 500 piece jigsaw puzzle, and Nana, Natalie, Hayden and I worked on it nonstop for three days. Then Danny, Vicki and Paige kicked in to help us finish it off. Hayden was so into it. It was great fun!

Yesterday was a beautiful day. Mid-70s with a slight breeze. So we went outside for a walk. She discovered clover in the grass and decided we needed to find a four-leaf clover. I explained that in my 36 years I have never found one. I remember once laying in a field of clover and searching for what seemed like hours and hours, and never finding a single four-leaf clover. But Hayden walked all over the apartment complex searching for little clumps of clover. This is the most walking she has done since she got out of the hospital. And after a while, we actually found one. We've already been blessed with a great deal of good luck. But a little more certainly couldn't hurt!

We are still looking at being here for another few weeks. In the meantime, Hayden is really getting anxious to get home. She told Nana she really wanted to go home. When Nana asked her why, she said, "Because I miss my friends and Mama Lucia's pizza." So if any of the Bethesda friends make it into Mama Lucia's please tell Chris (the sweet, tall, curly haired manager) that Hayden is talking about his pizza non-stop! He better get ready for her return to town, her appetite is back, and all she wants is Mama Lucia's.

The closest thing here is Cinelli's pizza, which has shops in New York, Rome, and Durham. We got the green light today from Dr. Kurtzberg to take her out to eat there today. We have to stay outside, but it was an amazing day today and the whole family went out to dinner together for the first time since last July. WOW!! Jordan was so excited about being able to go to dinner with her sister. It was so cute. There was even a Ben & Jerry's next door. So we walked over and got ice cream. How can such a routine and common thing become such an exciting event? Chocolate Chip Cookie Dough ice cream. She loved it!!

Dr. K thinks that her counts will begin to rise again. But she is not concerned. She thinks the flu really knocked her back. Now that she is recovering from that, we hope that her new marrow will begin to increase its production.

So sorry for the long-winded entry. I have so much to share, and once I get started it's hard to stop. Let me close by thanking all of you again for your love and support. That has been one of the constant comforts in this whole ordeal. We have not only seen the strength in our child, but the compassion and love of our friends and family. This still amazes and lifts us EVERY DAY. We love you all, and wish you all the best in your own struggles. We only hope that Hayden's courage can somehow give you strength in your lives, as it has for us.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Monday, March 28, 2005 3:21 PM CST

On Saturday, March 26th, Natalie's grandfather, Henry Britt, passed away. He had been sick for some time, and died peacefully in the hospital. This has been incredibly hard on Natalie and her family, especially Mrs. Britt, who was so close to her husband. We know that his suffering and pain have come to an end, and that he can finally be at peace. And we know that he will be with us forever in our hearts and memories.

Hayden and Jordan have been very sad about their great-grandfather's passing. And they have a lot of concern about their great-grandmother. Yesterday they all made pictures for her to try to cheer her up. Hayden and Jordan are very excited about getting to see her again soon.

Unfortunately, Hayden's doctors have advised Natalie against going to the funeral home tonight because of the risk that she may be exposed to something and bring it back to Hayden. Of course this is tearing Natalie apart, since she was always so close to her Grandfather. At the same time we know that he would want us to do whatever is necessary to protect Hayden. So we ask in advance for your understanding and forgiveness if we decide that Natalie cannot attend the viewing tonight and be with her dear friends and family in this time of grief.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Thursday, March 24, 2005 4:21 PM CST

Sorry it's been so long since we wrote. Things have been very hectic, as you can imagine. Hayden contracted Influenza A, and a pretty bad cough came with it. She never got a fever, but it was pretty scary for us. This is the very sort of thing we have been working so hard to prevent. After about ten days, Hayden started throwing up and having an upset stomach. On Thursday, it got so bad that we had to take her into the clinic. When the clinic closed they moved us back to the transplant hall, 5200. It was very tough to be back there, and we were grateful when they let me and Hayden leave at 1:00 a.m. on Friday.

On the same day we learned that Hayden's 100 day studies showed that 100 percent blood cells are male. This means that they all came from the donor cord blood, which came from a baby boy. So right now, her old marrow is not producing blood, and the new one is. This is incredible news, but I don't think we have started to enjoy until yesterday or today, when Hayden started regaining her energy from the flu.

It seemed that all the progress we had seen had vanished, and that she was less energetic and weaker than she was when she was discharged. She's lost about 5 pounds, which is a lot for a 40 lb child. And she still has a great deal of difficulty walking up the stairs. She's been sleeping a lot more and barely eating. I must say, it is really scary. Everyone thinks this is all being caused by the flu. But they don't know for sure. In the meantime, we are told that her natural steroid production may be low. Unfortunately we don't know, because they neglected to order the Cortizol tests during the 100 day study. We are told that this happens frequently (with about half the patients) and that they normally run this test. For some reason it was not run with Hayden. And they haven't been able to do the test since because they immediately started pumping her full of Hydrocortizone, which would make the test meaningless.

So we still don't know if this was just the flu or something wrong with her steroid production. In the meantime, Hayden has 6 more pills a day added to her repertoire.

On Tuesday Mama Kik came to take care of Jordan and Isabella so Natalie and I could both go to the clinic with Hayden and see Dr. Kurtzberg. They were all very excited to see her, and Hayden even perked up a little bit.

Yesterday she started to have even more energy, and we took her outside for a little walk. Today she went to school (one hour of tutoring at the clinic) and has gone all day with only one nap--a significant improvement. Her appetite has picked up as well. After we were almost home she told me she wanted Chick Fil-A. So I turned around, went all the way back to get if for her. She has not really been asking for anything to eat, so when she does, we go out of our way to get it or make it for her. On Tuesday she wanted Lasagna. But she didn't tell us until noon, and me and Natalie had to be at the hospital all day to wait around for Dr. Kurtzberg. So I ran to the store, threw it all together and caught up with them at the hospital. When Mama Kik got home with Jordan and Izzie, she threw it in the oven, and it was almost ready when we got back from the hospital at 7:00. She had about five bites, which was enough to make it all worth the effort.

She just ate some of her "favorite noodles," and is now awaiting the fruits of her culinary labors--wonderful smelling cupcakes that are now baking in the oven!!

So the last two weeks have pretty much sucked. But Hayden is doing much better, at least for now. We hope to be back home in Maryland by the end of April, hopefully in time for a fund raising event being planned by our friends in Bethesda at Alan's restaurant, Tommy Joes.

It sounds like an amazing event, complete with Alan's great food and atmosphere. We hope all locals, and even some out of towners, can make it. If at all possible Natalie and I will both be there together. If not, we'll probably take turns since it is so close. If you want more information, check out the link below.

Thanks to all of you for concern and love, and may you all enjoy this amazing season of rebirth. March 21st was the Persian New Year, and my father's birthday. Also the first day of Spring. And now Easter is upon us. It is a joyous time of year, and we hope you all join us in celebrating the new life rising in the warm Spring days ahead.

Wishing you all peace and love,

Hassan, Natalie, Hayden, Jordan and Isabella

Tuesday, March 15, 2005 8:26 PM CST

We found out late last week that Hayden's cough is being caused by Influenza A, a common form of flu. For a person with a normal immune system, this would be no big deal. Of course Hayden has hardly any immune system at all, and a common cold, a fungus, or bacterial infection could be quite serious. Fortunately, there are medications available that prevent flu viruses from replicating and shorten the severity and duration of the flu. She took a five day course of one of these medicines, and appears to be doing better. Her cough is much less frequent, and the doctors think she is breathing better, with less weasing.

In the meantime, Hayden's platelets have hung in there, and she hasn't needed a platelet transfusion for twelve days. She just got a red blood cell transfusion, and this was one month since the last transfusion. Again, this is a big milestone for her. We don't know when she will be totally independent of transfusions, but she seems to be getting there. Over the last few days her platelet level has drifted to the transfusion threshold, but then jumped back up again. We keep telling her how great a job she's doing making platelets. She gets a kick out of it! Her spirits have been pretty good, and have been really lifted by the arrival of Andrea da Silva, our great friend who used to take care of the girls. They are all so excited to see her.

Natalie's grandfather has been quite sick, and Danny and Vicki are taking care of him with Grandma Britt and Uncle Neal. We ask that you keep him in your thoughts and prayers.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella.

Monday, March 7, 2005 8:36 PM CST

We wish ALL OF YOU could have been with us tonight at about 7:30 when Hayden started cutting up! She was so silly. She started out by grabbing Izzy and giving her a big hug. She just walked up to her and hugged her. Something that seems so little. But we haven't seen it in months. And they all got so excited. Jordan grabbed Hayden and started hugging her. Then one big group hug. Then came the giggling and joking. All three of them. Hayden was telling jokes, and Izzy and Jordie were jumping right in. Hayden threw her pajamas on her head, and said, "I put my pajamas on!" She kept saying it until I looked over from the Kitchen and saw her with her Penn State T-Shirt covering her head. Izzy never missed a trick and started running around saying, "A Ghost! A Ghost!" Hayden did this for a while. She did that thing that six year olds do when they say a joke. It's really funny the first time. Then they tell it again to see if they get the same reaction. Then keep telling it over and over. Just a normal silly six year old.

The whole day was great. Hayden got tutored, and did really well with her teacher, Donna Allison. Donna comes to the house and spends an hour with her and an hour with Jordan a couple of days a week. Hayden also gets tutored at the clinic by two great teachers, Marshall and Elaine, when she is there for anything. But from Today's news, she may not be spending as much time there pretty soon. Her platelet count was at 29. She got her last transfusion on Thursday. Her transfusion threshold is 20. This is the longest she has gone without needing a transfusion. And her red blood cell count is up, and she hasn't need red blood cells for a long time. Even though she hasn't been getting her GCSF (which boosts White Cell production) her white count is also rising. So her marrow is working all on its own to make all of her blood. It is just incredible to think about.

After we found out she didn't have to go to the clinic today for blood, we went to the park. I noticed that she is feeling physically weak, and I resolved to get her walking again, like she did at the hospital. Natalie played with Jordan and Izzy at the park for a while, and I walked Hayden over. This was a really long walk for her, but she enjoyed it. It was a beautiful day. About 65 degrees, sunny with a warm breeze. Great blue sky. Hayden enjoyed feeling the warm air blowing on her. She always enjoys a nice fresh wind. (Something I learned to love through Baba, and may have imparted on her). And this was the first one she'd felt in a long, long while. Probably since July of 2004.

All in all, a great day! It also reminds me that I've been meaning to mention Hayden's reliance on blood transfusions. Blood donations by ordinary people have saved Hayden's life many times over. The act of donating blood is just amazing. People giving up their blood for people who need it. It is such a simple gesture, but when you think about it, so much more. We give a total stranger information about our private lives, stand in line, get poked with a needle, sit still while our blood pours into a bag, get a cookie and sticker, and go on our merry way. We are feeling weaker because we have just taken out a sizeable amount of the fluid that gives us life to share with another person. Thanks to all of you who have made this donation of blood. The spirit that drove you to do that is inspiring. With love and gratitude,

Hassan, Natalie, Hayden, Jordan & Izzy

Friday, March 4, 2005 8:37 PM CST

Day 94 and Hayden is slowly but surely getting back into the swing of things. We have been busy this week with a few visits from her primary nurse at Duke, her aunt and cousin, her Nana and she even made a trip to Mama Kik and Poppy's house.

On Wednesday Hayden invited one of her favorite nurses, Andria, over for dinner. This was one special dinner because Hayden prepared the lasagna and the cheesecake herself. She has really been busy in the kitchen lately. It is wonderful when she asks us about every other day "can we bake something today?" Of course we jump up to go to the grocery store and spend the rest of the day making whatever she wants. She had a great visit with Andria!

Earlier in the week, Nana came down to help us. It was the first time she had seen Hayden in a while so she was very excited about seeing our little sweetie. It was so nice to have an extra set of hands. Thanks Annette!

Hayden was also able to see Aunt Kaye and Ashley this week. They have been a tremendous help since Izzy and my mom have been sick. My aunt just picked up where mom left off while she was in Clinton with Izzy. Hassan and I were able to spend some quality time together for the first time in many months. We really appreciate all of your help!

Today was a very big day for Hayden. We actually went to Clinton to pick up Izzy from my mom's house and we were able to take Hayden with us. This is the first trip she has made other than the ones to the hospital or clinic. She was a little apprehensive about going but she had a great time. She found herself participating in an indoor Easter Egg hunt with her sisters before she realized what she was doing. The last time she was at my mom's house was the weekend before she started radiation in early November. I think we'll be making more trips to her house soon!

As always, Dr. K saw Hayden on Tuesday. She was pleased with Hayden's progress and thinks that we should be able to go home in 3 - 6 weeks. She has a cough right now which we think is a virus that one of us has had. We are hoping that this does not present a problem as she has had it for about a week now. They ran a ton of viral tests, a strep test and a chest x-ray this week and all is normal.

We continue to take one day at a time, take nothing for granted and try to enjoy every minute that we spend together. Unfortunately, it takes an event like this to make you realize just how special life is - I truely hope that none of you ever have to endure such a difficult time. We hope that all of you will gain from this experience and enjoy each and every day in a whole new way.

There are two kids on 5200 that have recently been admitted to the PICU. These families are going through extremely difficult times. Please keep these families and the other families on 5200 in your thoughts and prayers.

Love,
Natalie

Wednesday, February 23, 2005 7:49 PM CST

I took Hayden to see Dr. Kurtzberg yesterday, and the report was great. Hayden's stomach pain has been much less frequent, and her energy level is increasing daily. They have continued to taper her steroids, and stopped her blood pressure medicine altogether.

The most exciting development, however, is that she is now only taking one IV medication (2 times a day). Yesterday she started taking her cyclosporin by mouth. This used to be a two hour IV that we had to give to her first thing in the morning and in the evening. Now she takes four pretty large pills instead -- in the morning and the night. She was a little apprehensive about it, but is now very proud of herself. She will be taking this immunosuppressant for almost a full year.

Once she is off all of her IV medications (next week or so) she can have her central lines removed. The first line was put in immediately after she was diagnosed at Georgetown. This was a surgery where the line was inserted into her chest so that they would be able to administer medication and draw blood without having to use a needle every time. When we got to Duke, they placed another line into her chest because of the massive number of medications her transplant required. But these lines present a risk of infection and limit her activity. For instance, she can't swim, take a shower, or get it wet for any reason.

In place of these lines, they would insert a "port," which is a small device underneath her skin. When they need to give her IV meds or draw blood, they would numb it with topical analgesic and then put a needle into the port. Hayden is not happy about the needle thing, and she is going to have to have blood draw once a week for a long time. But she is coming around, and I think that this is the way we will go.

As far as coming home, we are now at day 84. And we are on track to come home after her 100 day studies, which take three to four days. So assuming all goes well, we will be back in Maryland in mid-late March.

Some of our friends from the law firm I used to work for had a brunch for Hayden over Valentines day weekend. It was great seeing pictures of this hard-core party crowd with all of their beautiful children--especially the ones I still haven't even gotten to meet. I am so homesick and ready to see all of these great friends again.

I am sure Hayden is going to be excited to see her friends again soon too. She is starting to really regain her confidence, and take her place at the top of the sibling heirarchy. For the past two months she said very little to her sisters. Now she is making jokes, and weighing on on their squabbles, making her view of which sister is righteous known to all. And Jordan and Isabella are coming right into line.

This is going to be interesting over the next couple of years. In all likelihood, Hayden will not grow at all over the next year. Of course Jordan will continue to shoot up like a wildflower. Although her body may stop growing for a while, I'm sure her personality will continue to flourish, and her bigger little sister will show her the respect she is due.

As I was writing this, Hayden and Jordan are arguing over what magazine to look at with their Aunt Kaye, who is helping us out for a while. Vicki is sick, and taking care of Danny, who is also sick. Nana is coming Friday to jump in too. We are excited to see her!! (The argument is over, and Hayden won). I just got sick, and Isabella is still sick. Jordan and Natalie are doing well. We've washed our hands so much that they are raw. And we have used so many Clorox sanitizing wipes that we ought to have stock in the company. I'm wearing a mask so that Hayden doesn't get whatever I have.

If you have not yet made an entry in the journal please do!! We LOVE hearing from you. And we don't care what you say!

We will try to keep you posted on any developments.

Love,

Hassan, Natalie, Hayden, Jordan, and Isabella

Sunday, February 20, 2005 9:02 AM CST

We are still reeling from the loss of Grant. At the same time, Hayden has been doing absolutely great. She is baking, doing art, playing on the computer, and enjoying reading for the first time ever. It would seem hard to enjoy such great milestones under the circumstances. But the joy is overwhelming. We know we have to celebrate her victories, and savor every minute she is happy and energetic. There would be no honor to Grant or the other lost children if we could not. So we cherish these days, mindful that worse ones may come.

Monday, February 14, 2005 12:23 AM CST

Grant Adkins, a child who was treated at Georgetown with Hayden (and received a transplant at Duke one week after Hayden), passed away late last week. Grant was a great little boy, with an infectious smile and always upbeat attitude. He has been in the intensive care unit for almost two months battling an infection. Again, I don't have words to describe our grief, or to express our empathy for Grant's parents, Jayne and Bill. But I do feel that his fight should not be forgotten. I remember when he showed up at Duke how excited he was to see Hayden, flashing her the markings on his tummy that were made for his radiation treatment. Such a beautiful smile. A smile that only a child can possess. We'll keep him in our memories forever.

Sunday, February 6, 2005 8:35 PM CST

Hayden has been slowly but surely regaining her energy. She still has a lot of stomach pain, and is very lethargic, but she's smiling a lot more, and even laughing out loud, which is totally new. This is a very gradual and slow recovery, but I think she is progressing well.

I went out of town for work for a week, and Natalie and Hayden were alone in Durham. Mama Kik took Jordan and Isabella to Clinton, and Jordan had a urinary tract infection. She was in a lot of pain, and it was tough not being there for her. As great as she's been, she is still only 5, and wants her parents when she is feeling bad, just like any other child. She's doing much better now, and Natalie and I are together with the kids, and Vicki has headed back to Clinton for a well-deserved break. It is absolutely amazing to be together as a family--the five of us. I think we all forgot how wonderful it really is. We were afraid that Isabella would have a hard time without Vicki, who she loves so very dearly, but I think she is ecstatic to have us all together, and hasn't looked back. Jordan has also been in great spirits, and revels in the attention she can get from having both of her parents with her. Hayden is happy to have her sisters around, and also happy when we take them out to give her a break from their high octane antics. She just doesn't have the energy to deal with them non-stop.

Cancer. How many of us have had to face it or will have to face it in our lifetimes? I know cancer has touched many of your lives, and it continues to touch ours. We just discovered two days ago that our sweet dog, Pasha, has cancer. It has spread through her liver and spleen, and the vets are giving her a couple more months to live. How can we tell Hayden, Jordan and Isabella that they are going to lose their dog? When I ask Hayden who she misses most from Maryland, it is Pasha. Obviously the loss of a pet in no way compares to the hardships that we all face in our lives, but the timing is horrible. Pasha's kind affection has served as great therapy for me, and I think especially so for Jordan as well. Natalie and I remember picking her up in West Virginia as a cute little puppy like it was yesterday. Anyway, we haven't told the kids yet, and we will not be telling them that she is dying of cancer. They know she is old, and that is enough. James and Peggy are taking good care of her, and she is getting lots of love from Noah and Mitchell. They say she is not in any pain, and is still a happy dog.

We also learned that another child on the transplant floor with Hayden passed away. Paris was a sweet little boy with a real passion and talent for art. He drew pictures for all the nurses, and Jordan has a one of his Spider Man drawings on our fridge. When we left the floor we thought he was doing great. I am still stunned. I have never had to confront such consistent and unrelenting loss of beautiful young life. Nothing of course compared to what has happened in Asia, Iraq, or Sudan. But we know these children and their families. It is just so awful. I can make no sense of any of it. There is no sense in it. There is no great redeeming Hollywood ending. May his young innocent kind soul rest forever in peace, and may his family find the support and love of their friends, family and faith to deal with this tragedy.

Tuesday, January 25, 2005 9:41 AM CST

I'm sorry we haven't updated in a while. Things have been very busy for us. Busy, but overall very good.

Hayden is doing well. She has some constant tummy pain, which was accompanied by constipation, now turned the other way around. And she has some discomfort in other areas as a result. She is also very lethargic. This is most likely a result of the radiation treatments. Most of the children after transplant are very weak and constantly tired. Dr. Kurtzberg says we should expect to see a significant difference in her energy level after about two months. This is a gradual change, and it is hard to see a day to day difference. But we can tell a difference from when she was discharged.

Hayden is going up and down the stairs without too much difficulty now. The steroids really weaken her leg muscles, and many children have difficulty going up stairs for several months after transplant. She still sleeps a lot, but no longer naps during the day. She just goes to bed a bit earlier than usual.

She doesn't get up and run around with her sisters at all. But she is clearly happier when they are around. Isabella is in Clinton with Mamma Kik, and Jordan has been with me, Hayden and Natalie. They have both enjoyed this. Jordan has been so kind and gentle to Hayden. She hasn't complained about being bored, even though she has nobody to actively play with. She does miss Isabella, though, since Izzy is able to run around and play with her, but Hayden can't. Hayden also misses Izzy, and has asked for her to come back home.

Vicki will probably come back with her tonight or tomorrow. Tomorrow I am going out of town for a week for work (my first real trip since we came down here) and Natalie and Vicki will have all three of the kids to themselves. I know it sounds crazy, but that is quite a handful for two people. Just taking care of Hayden is pretty much a full-time job, which is mostly handled by Natalie. Tons of meds, oral and IV, mouthcare, and keeping her entertained. And when Jordan and Izzy are around, we need to take care of them, keep them entertained, and try not to let them get too bored.

Last weekend was an amazing one for our family in another respect. Natalie's aunt and uncle, Faye and Zack McCullen (Aunt Mimi and Uncle Coonie) arranged for a massive BBQ fundraiser to help us pay for the transplant related expenses not covered by insurance. Their good friends, Fred and Judy Cumbo, helped them organize and run the event. It was absolutely amazing. On Friday, over a hundred volunteers worked from 6:00 a.m. until 8:00 p.m. preparing the meals for over 6,000 hungry friends, family and neighbors. The night before, Zack, Natalie's cousin, and his pig-cooking volunteers cooked over forty pigs, all donated by local farmers (large and small), prepared hundreds of gallons of coleslaw and potatoes, and sliced hundreds of homemade cakes.

I arrived on Friday morning to see folks packing up and delivering hundreds of meals all across the area--as far as an hour and half away. I couldn't believe how smoothly they had this operation running. At the same time, thousands of people were driving through to pick up meals or coming into the civic center to sit down and share a meal together.

This was an amazing experience for me (Natalie had to stay in Durham with Hayden). The folks in Clinton adopted me pretty early on when I met them years ago, and I was immediately impressed by the community, which reminded me so much of my own hometown, Oak Hill, West Virginia. A real community of friends and family. But on Friday, I saw the kind of kindness and love--from hundreds of family, friends and strangers--that is truly inspiring. I met church leaders, children, and distant cousins, who gave up their day to help Hayden and our family. There is such a huge sense of responsibility that comes when you are the recipient of such kindness and generosity from so many people. But at the same time I saw the excitement and joy that the volunteers shared at being able to help Hayden. The love and positive energy was palpable. That's when you realize it is not about us, or them, or even in some respects about Hayden. It is about the greater side of human nature that drives us to help each other through hard times. It is the same spirit that brought us together after 9/11 and sent millions in private donations to Southeast Asia after the tsunami. And when your family is the recipient of that generosity and love, it is uplifting, humbling, and gratifying.

So for all of you who have done so much for us, whether in Clinton, Maryland, Virginia, D.C., Chicago, California, West Virginia, Nevada, Seattle, Massachusetts, or elsewhere, thank you--not only for the real life practical assistance, but for the inspiration and faith in humanity that you have given. You have reminded us of what it is like to be young, and to look for and find only the best in people. We can only hope that your love and kindness will be returned to you a hundred fold when you or your family is in need. With love and gratitude,

Hassan, Natalie, Hayden, Jordan & Isabella

Friday, January 14, 2005 11:29 PM CST

As I am sure many of you already know, Hayden was discharged on Thursday!!! I can't begin to tell you how excited we are. She was out on pass during the past week for about 4 hours a day and during that time she would just come to the apartment and sleep. Hayden hasn't really been herself until she was actually discharged. In the 36 hours she has been home she literally has eaten more than she has over the last 45 days. Today is DAY 45 by the way! Although she is home and out of the hospital, she still has 2 great nurses - Natalie and Hassan. We have spent the last 2 days learning how to care for Hayden just as her wonderful nurses did at Duke. Hayden has 4 IV pumps which administer 4 different IV medications. She also has about 10 different medications that she takes by mouth twice a day. To give you an idea...

PO Meds

1)Amylodipine - to maintain a normal blood pressure
2)Acyclovir - anti-viral prophylaxis
3)Methadone - to help wean her from pain meds
4)Prilosec - to ease tummy acids and aches
5)Voriconazole - anti-fungal prophylaxis
6)Senokot - laxative - she has always had poopy issues
7)Actigall - to decrease her billirubin which is increased due to the voriconazole
8)Zofran - to decrease nausea and vomiting
9)Zoloft - to help with depression caused by being in the hospital for 6 months

IV Meds

1)Cyclosporine - anti-rejection medication
2) GCSF - to stimulate her white blood cells
3)Solumedrol - steriods
4) Nutrition

She hardly ever complains - she just wants to take the little pills first. She is just wonderful!!!
In addition to this Hayden will spend every day in the clinic now that she has been discharged checking her labs. For example, today we were there from 12 - 4PM getting platelets. We'll take this over the hospital any day!

Jordan and Isabella have not seen Hayden in about 2 weeks but we will be bringing them back to the apartment tomorrow. I think Hayden and Jordan have a lot of mixed emotions about this - as do Hassan and myself. We'll let you know how it goes!

We will try to update with pictures from discharge soon. They are amazing!!!

Love,
Natalie

Friday, January 7, 2005 10:52 AM CST

We just got some great news--Hayden just got back the genetic test of her peripheral blood, and it is 100onor cells. That means that at this point, her original marrow (and cancerous cells) is not producing blood. Instead, the donor cells are fully engrafted and working away.

This is a huge hurdle for Hayden, and she sailed over it. She's been in some pain and discomfort for a while--stomach pain mostly. We are getting a CT Scan today, and Hayden's doctor doesn't expect to see anything, but we just want to be sure there is no graft v. host disease brewing in there. Her mood has also been a bit low. We think she is very nervous and anxious about going to the apartment. At the same time she is pretty bored.

When she comes home our lives are going to change quite a bit. She's going to have to be tucked away from almost everyone for a while, and then for the next year will still need to remain in relative isolation. But we will gladly take any measures to get through that time.

Right now, the biggest risks we face are some kind of infection and relapse. We can do something to control the former, and the risk of the latter has gone down considerably in light of today's new.

If you feel like smiling for Hayden, today's a good day to do it! Love to you all,

Hassan, Natalie, Hayden, Jordan, and Isabella

Wednesday, January 5, 2005 10:12 PM CST

Today was a good day - Hayden has officially engrafted!!!!! Her white count is 1.5 and her ANC is 1170 and this is without any cells from me. At this point I am scheduled to have my line removed Friday morning because Hayden will no longer need my cells. Hayden is starting to get a little of her energy back after being zapped of ALL energy during Christmas while she was growing cells. According to Hayden, growing cells is hard work!

Hayden also received her 100th footprint for her necklace today. In case you don't know what this means - a lap is down the hall and back - you have to do 5 laps to get 1 footprint - Hayden got 100 footprints - so this amazing little girl has walked 500 laps since her transplant. Everyone on the hall is amazed - including the nurses and doctors. I think she might have set a record and she is very proud of this accomplishment.

We are hoping to be able to bring Hayden to the apartment tomorrow for a few hours on pass. This is the next step before discharge. Hassan and I are trying to figure out if these few hours should include her entire family or just the three of us. Hayden gets a little irritated when her sisters get really loud - which is most of the time.

I shall go so I can clean the apartment before my baby comes home! As always, thanks for keeping us and the families on 5200 in your daily thoughts and prayers.

Love,
Natalie

Saturday, January 1, 2005 10:29 PM CST

Today was a terrible day on the unit. After a long and hard fight, Ryan Smedley, the little boy down the hall from Hayden, passed away. We never got to know Ryan, but were able to spend some time with his family, including is two teenage brothers. This is obviously a terrible loss to them, and there is no way to convey in words the pain that they must be feeling today. Please include this kind and loving family in your thoughts and prayers.

Thursday, December 30, 2004 0:57 AM CST

I have used many words on these pages to express my love and gratitude to so many people that have helped us in our struggle to save Hayden. But I have not taken the time to share my feelings about the person who has done more in this fight than anyone could ever hope for, my amazing wife Natalie.

In light of the day to day stresses of the situation, it is easy to take the most important things for granted. Natalie and I see very little of each other. When we do, it is for ten, twenty, maybe thirty minutes when we trade shifts at the hospital. On Christmas Eve we actually had the whole family together for a few hours, and it was the first time in weeks. We are both working on very little sleep and frayed nerves. Our communications are all about medicine and the things we need to do to keep the family moving.

But despite all of that, and despite our constant quarrels, my love for Natalie has never been stronger. She is a constant guardian over Hayden and the rest of our family. She manages to keep the family running while watching over everything that is happening in Hayden's care. She takes time for Jordan and Isabella, and never stops being the greatest mother a child could dream of.

I knew this about her when I met her. Somehow, I looked deep into her heart, and knew that she was exactly what I needed, and what my children would someday need. She has never let me down. Instead, she has soared beyond my wildest hopes and expectations. Without her, I would be lost right now.

And even though we see very little of each other, I am falling in love with her all over again. I am falling in love with the woman she was, and the woman she is becoming. I am falling in love with her for her passion and her faith. I am falling in love with her for her doubt, and her sadness. I am falling in love with her for her anger, and her resolve. I am falling in love with her for her sensitivity, and her toughness. As unlucky as I feel sometimes, I know that I really hit the jackpot where it counts.

So tonight, I thank Natalie, with everything in my heart.

Hassan

Monday, December 27, 2004 11:54 PM CST

The waiting is over! Starting on Christmas Eve, Hayden's white blood cell count began to steadily rise. It had been consistently at a level of .2 for weeks. We assumed that most of these cells were from Natalie. Then they started creeping up to .3, .4, and on Christmas day, to .5. In addition to the white blood cell count, we are looking at the Absolute Neutrophil Count, which must be over 500 for three consecutive day for us to be able to say that Hayden's new marrow has "engrafted." Her ANC was at about 400 on Christmas, dropped back down to about 300, and was up again yesterday to over 400. In the meantime, her white count is continuing to rise, and was at .7 this morning. This is the first major hurdle, and we are cautiously elated that she seems to be on her way to engraftment!

All of this cell growing has been incredibly exhausting for Hayden. Her bones ache, and she has a slight rash on her face, stomach, arms and back. In addition, she has been quite constipated, and her stomach really hurts. So in spite of all of the good things happening to her, she is actually pretty uncomfortable. She just wants to sleep cuddled up with me or Natalie, while we rub her tummy. A duty that welcome lovingly!

In spite of her discomfort, I think she had a really good Christmas. On Christmas Eve we were all together in her room for a long time, exchanged presents and had a good time. She crashed out at about 6pm and didn't wake for Santa Claus until about 9 am the following morning. She was overjoyed at all of the gifts. But she took more pleasure in doling out her gifts to her nurses and to me, Natalie, Jordan and Izzy. Of course these gifts are all handmade treasures that are touched with the love of the sweetest and kindest child you could ever hope to know.

So all things told, it was a great Christmas for us. Obviously very different than any other Christmas, but we truly felt the love of our friends and family who did so much to make this a special Christmas. From the wonderful cards from the kids at Summersville Elementary School (where my mom works) to the generous gifts for the children from so many others, our family was showered with love. Even in the midst of our difficult situation, I can fairly say that we are learning the value of every moment we have with Hayden, Jordan, Isabella, the rest of our family, and all of our friends. So to that end, I think I can confirm my suspicion that I voiced in one of my early journal entries that this entire experience is one that has ultimately enriched our lives, in spite of (and because of) the hardship it has also brought.

For example, Jay and Patty (our neighbors on Melvern) sent me a great gift--a book on how to juggle complete with three juggling balls. I have always wanted to juggle, but pretty much have absolutely no hand-eye coordination. When I got the gift I took it out and gave it a shot. Balls were flying everywhere, and Hayden, Jordan and Isabella were having quite a laugh. But Hayden, in her always generous and gentle way, kept reassuring me that she thought I was "really pretty good for just learning," and that "I am a good juggler." Even if I never learn to juggle (in the literal rather than figurative sense) that gift, and the reminder of Hayden's kind and loving spirit, will never be forgotten.

Thanks to a friend of Natalie, Anne Faircloth, Jordan and I will be going to the Duke v. Clemson game on Sunday. We are both really excited!

Speaking of Jordan, she is doing pretty well under the circumstances, but this has all been very tough for her. She is quite a character, and is so much fun to be with. On the other hand, she has a lot of understandable anger about everything that's happening to her and her sister. She loves whatever individual attention she can get, either from us or from others. When James was in town last week he took her out for a father/son day. They played soccer, he taught her wrestling moves, they went shopping, she went jogging with him, and she went for a bike ride. Although I am incredibly jealous that he got to spend this time with her, I am also grateful that she can get this kind of attention from such a great friend. Hopefully I'll be able to resume my role as father to her and Isabella again soon.

Thanks again for all of your love and support. We know that 2005 is going to be a great year for our family, and hope that it will be for yours as well!

With love and gratitude,

Hassan, Natalie, Hayden, Jordan, and Isabella

Sunday, December 19, 2004 2:18 PM CST

In the words of Tom Petty, "The waiting is the hardest part." And that's exactly what we are doing. Waiting for Hayden's cells to grow. Fortunately, in the meantime Hayden has been doing relatively well. She walks constantly, has had good spirits most of the time, and has managed to stay free of infection. Now we standby and wait for signs that her new marrow is beginning to engraft. The nurses drop notes all the time, imploring, "Grow Cells Grow!" This is the mantra around here, and we are obviously not alone in this waiting game.

Hayden had a very good day yesterday. Her Auntie Ella flew in from DC to continue the annual Christmas tradition of building gingerbread houses. Last year we got carried away and built a whole village. This year was even more spectacular. Ella came with a massive suitcase loaded with candy, decorations, and even miniature gingerbread people. Although Hayden's energy level was a bit low yesterday, she had a great time. Other patients, siblings, and nurses joined in the fun and helped decorate gingerbread houses for our village, which is now the centerpiece in the activity room.

Of course the construction of this village constantly reminded us of the title of Hillary Clinton's book, "It takes a Village," which I never read. But I understood the idea to mean that we need our communities to support our families. Of course, I couldn't agree more under the circumstances! And while we were building our fictional village, a real community was hard at work to support our family. Yesterday and Today, Hayden's grandfather, uncle, and aunt from Clinton hosted a golf tournament to help raise money to pay for all of the expenses that are not covered by insurance (and there are many). The event was a great success, with over 40 teams participating. Hayden and I are looking forward to seeing the pictures. In the meantime, thanks to everyone for making this such a great event.

Last night Hayden had a relatively restless night. She had a reaction to one of the drugs (they think an antibiotic) and had some uncontrollable jerks and spasms in her legs. She was really scared and upset, but they removed the antibiotic and put her on a medication that stopped the spasms quickly. She woke up this morning with a mild fever. Again, we don't know if this is just engraftment, or an infection. But they always assume it's an infection until it proves otherwise. So today Hayden has been very lethargic, and hasn't done much. She's sleeping now (although in the tradition of my father, she claims she is "just resting my eyes") and I am just standing guard over her.

Let me take this moment to thank so many of you for your kind words (through calls, emails and guestbook postings) about our angst over the decisions we've had to make. I guess if my journal entry was a subconscious cry for reassurance, it worked. It was really great to hear from so many of you, and it has strengthened our hope, faith and resolve that Hayden is going to come out of this ok. In the meantime, we cherish and need your love and support. For that we will always be grateful.

I just flew back to DC for a quick business trip (less than 24 hours on the ground) and it was very strange to be back in the house and in the neighborhood. I kept a deliberately low profile just because my time was so short. But I think being at home made me realize for the first time that it really is Christmas season. And although this is a bittersweet time for us this year, it is truly a time of love, goodwill, and faith. And we believe that this spirit will bring strength to our beautiful Hayden at a time she needs it most. The holiday season means so much to so many people, but to the young, it is truly a magical time. It is my hope that some of this magic will come visit Hayden and the other beautiful children (and their amazing families) here on the bone marrow transplant unit at Duke.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Tuesday, December 14, 2004 10:14 AM CST

Today is day 13 post transplant. Hayden still seems to be doing well. She has a rash and is still pretty itchy but the Doctors and nurses seem to think that this could be the first signs of engraftment. GROW CELLS GROW!!!!! Hayden continues to get my cells 6 days a week which I think has been very important for her as far as her immune system goes. We are still taking 1 day at a time.

Hayden is full of energy! She does laps on the hall to earn these little plastic feet to add to her Duke blue shoestrings. Dr. K says she is going to break a record on the transplant unit. I will also have to say that her steriods have really taken a toll on her mood. She is very emotional and cries over small things and gets very irritated. But when she is not overwhelmed by the steriods she is the sweetest little angel that you've ever met - the usual Hayden.

It is going to be a particularly tough day for the families here at 5200. One of the kids passed away this morning. He had been sick for a while and was on a lot of medication and machines to help keep him here. I think a lot of the machines were taken away this weekend and so he passed away this morning. This is really hard in so many ways. I feel so bad for this mom - she lost her husband, Mikey's father, to cancer a few years ago. I can't even imagine what she is going through. Please keep her and the other families here in your prayers.

GROW CELLS GROW!!!

love,

Natalie

Tuesday, December 14, 2004 10:14 AM CST

Thursday, December 9, 2004 11:37 AM CST

I just realized that our last update was transplant day - sorry! It is hard for me to get to the computer down here because Hassan uses his laptop for work which means it is always by his side and of course, Hassan and I are never at the same place at the same time. There is a computer at the transplant activity room but Hayden usually wants all of your attention when you are with her.

Now I will tell you about Hayden! Yesterday was her best day yet. I think she smiled most of the day. She decided on Tuesday night that she wanted to set up a cookie stand on the 16 unit transplant hall. At first she wanted to sell the cookies but I convinced her that giving the cookies to the kids and their parents would be a better idea. She was ok with that so she made a sign that said "COOKIES (Tips are Welcome)". Needless to say she made a lot of money. She was soooo excited about this and all of the kids, parents and nurses thought this was just wonderful. I think it was the first time that anyone on 5200 had an opportunity to see the real Hayden. Now she wants to know what we are going to make next week.

Since the transplant she has had a few mouth sores but not too bad. They have actually started to get better in the last 2 days - the nurses think that the white cells that I am giving her 6 days a week are helping with the sores. She has a pump that she can control for pain but she uses it less and less. So far the doctors have been pleased with her progress.

Hassan and I are patiently waiting for her new cells to engraft which could be anywhere from 7 days to 45 days - no signs yet. It is so difficult to see all of the kids here and to hear their stories about their illnesses. Several kids have been discharged since we have arrived and of course those rooms are filled within hours with readmits or new kids with new illnesses. Please remember to keep Hayden and all of the kids here in your thoughts and prayers as we approach the holiday season.

Jordan and Izzy are doing great! They enjoy seeing their cousins on a much more regular basis. I think they have become accustomed to having a mom OR dad at any given time and a Mama Kik that is always there.

As always, thanks for the love and support that gives us strength to face every day.

Love,
Natalie

Thursday, December 9, 2004 11:37 AM CST

Wednesday, December 1, 2004 10:37 PM CST

As uneventful as the transplant actually was, today was still an emotionally exhausting day. Hayden felt pretty awful all day (pain in her throat and stomach, hunger, and moodiness), and was not too thrilled about the big deal being made over the transplant.

Natalie and I also shared some anxiety and stress. One of the toughest things about this process as a parent is being the one who ultimately has to make critical decisions. And as reflected in prior journal entries, one of the biggest was Duke v. Minnesota, and the Duke cord blood unit v. the German unit. I went back and looked at my entry right after I made up my mind that Hayden would never go to Duke. I think I expressed a firm resolve that eventually dissipated in light of many different circumstances. But I still have doubts. And I am sure I will go to my grave with those doubts. Among them, is our ultimate decision to use the Duke cord blood unit. Dr. Kurtzberg made a strong argument that this unit was better because a greater mismatch (4/6 as opposed to 5/6) has a higher anti-leukemic effect. And she gave me a recent study conducted by the doctor who did the very first cord blood transplant that indicated that this was true. And her own experience (and she has more cases than anyone) leads her to believe this is true.

Because Hayden has relapsed, the biggest risk now is another relapse after transplant. She is in a high risk category for this, and so we wanted to do everything we could to decrease that possibility. So in the end, we trusted Dr. Kurtzberg's judgment and went with the Duke unit. I really hope that my earlier impressions of her were wrong and that it was right to trust her. She has done more of these than anyone in the world, and her success rate in curing AML patients in relapse is incredible compared to the rest of the community. So in the end, we decided to take her advice--which is in direct conflict with the advice of Dr. Wagner in Minnesota, who thinks we should have used the German unit, even though she was in relapse.

So anyway, long way of saying all we did today was worry about whether we made the right decision.

On the positive front, Hayden started getting her IV nutrition today, and seems to have perked up already. Her mood is a lot better, and I got lots of smiles out of her while we did a picture together on the computer. That old Hayden is peeking out, and I'm sure will be back in full force real soon.

Your notes, calls, emails, journal entries, cards, and telepathic messages of hope over the past several days have really moved us. Please keep it up--it really keeps us going! We love you,

Hassan, Natalie, Hayden and Jordan

Tuesday, November 30, 2004 9:36 PM CST

Hayden had a fever on Friday night. She went up to about 104. Her blood cultures revealed that this fever was probably caused by a strep infection, which is considered a good thing, since it can be treated by antibiotics. Overall, they were actually surprised that she went as long as she did without having a fever. Now she has to be kept on an antibiotic continuously, which has some danger of causing kidney damage, which is something that they are alert to and will be following closely.

On Saturday night Hayden started with the ATG, which is essentially human antibodies put into horse serum to grow, and then put back into Hayden to kill off her immune system. This was a very awful night for Hayden. She got extremely cold in her extremities, while spiking a fever of over 105 F. I spent all night putting cold rags on her head every five minutes. She was a real trooper, although she kept repeating how much she hates fevers.

Hayden has pretty painful sores in her throat (again totally anticipated) and hasn't eaten anything of substance for about four days. In addition, she is getting pumped full of steroids. This has caused an unbelievable impact on her mood. She is totally unlike her normal sweet self. She yells at everyone, especially the nurses, and just can't help herself. They are going to put her on IV nutrition tomorrow afternoon after her transplant, and they will reduce the frequency of her steroids. So we are hoping that she will bounce back to her normal self pretty soon. In the meantime, we keep reminding her that her Great Aunt Pattie pointed out that it's not her fault, and she can just say, "Sorry, it's just these drugs I'm on." In fact, I just was talking to Hayden about being nice to the nurses, who she liked so much. And she said she can't help being mean to them, and then pointed out that it's really their fault anyway, since they are the ones giving her the medicine that makes her feel this way. I couldn't disagree with her simple logic. And nobody seems to take offense, since they see this all the time.

Hayden did have a good hour today (after a short nap) and we made snowflakes and did laps around the hall. Hayden gets little beads for each lap she makes, and she is very into this!

Anyway, tomorrow is Hayden's transplant, which I think is actually going to be pretty anticlimactic. It only takes a half an hour, and then we just wait for her new marrow to engraft. Natalie is going into surgery on Thursday morning to have her central line placed. She will then start donating white blood cells to Hayden, which should help her fight off infections until her new marrow kicks in.

Thanks for your support,

Love,

Hassan, Natalie, Hayden, Jordan and Isabella

Saturday, November 27, 2004 10:05 AM CST

We had a nice Thanksgiving at the apartment. Although we thought she would be in the hospital, Hayden actually was well enough to stay home during the entire course of radiation therapy, which ended yesterday. She got 9 doses, and seems to be doing pretty good so far. Her white blood count is basically nonexistent, which is what is expected. She was admitted to the hospital yesterday, and we are in our new room now. They just started her next round of chemotherapy. Hayden has had some nausea, stomach pain and headaches, but overall, the doctors are very pleased with how she feels. She is going into transplant from a pretty good position, since she has no infections and her organs are all still very strong. We'll keep you posted on any developments.

Love,

Hassan, Natalie, Hayden, Jordan and Isabella

Monday, November 22, 2004 7:16 PM CST

Two entries in one day. Some kind of record, I know. But I think that the last entry was up for long enough to generate a few letters to Jordan!

Hayden had her first round of radiation today (actually two rounds). She is ok, but having some pain in her jaw and headache, which are typical side effects. The immediate side effects should subside after a few days. I can't believe that they are doing this to my little baby. I know that this is necessary, but it is an awful burden to choose this sort of therapy for your daughter mindful of all the horrible side effects, which include decreased congitive abilities, increased risk of cataracts, decreased lung functioning, likelihood of sterility and on and on.

Hayden's other grandma (Nana) is in town for a few days, and it's been great having her around. She went to the grocery store today and stocked us up. We've made tons of little drive bys, but have not had the time for a full out grocery trip. I think we are set for a while, but our little freezer is bursting! Of course, the kids are really excited to have her around, and Jordan has come to associate the word Nana with the word gift!! (We are trying not to spoil them, but as you can imagine, this is not easy. It is so hard to ever say no to anything they want.) It's also great for me to be able to get a hug from my Mom at a time when I all I can think about is what it means to be a parent; and to appreciate what great parents Natalie and I both have.

I want to thank Hillary and Brian Munson for their great fundraiser. It feels really weird to accept monetary gifts after we've both worked so hard to be self-reliant. But we do really appreciate it, especially because of all the effort and thought that they put into the event (a clothing swap-sale) which sounds like it was a lot of fun! And Hayden loved the big giant card! We'll try to keep you posted more regularly. In the meantime, keep posting notes, we love to hear from everyone.

Monday, November 22, 2004 3:41 PM CST

Thanks to everyone for all the mail to Hayden. Unfortunately, this has caused us some problems with Jordan, who is very disappointed that she isn't getting any mail. If any of her friends are checking in, she would love to get a letter! Thanks,

Hassan

Monday, November 15, 2004 10:08 PM CST

I am writing this note from our new home in North Carolina, after reading the wonderful journal entries left by so many kind friends and family. We have been so touched by all of the things that you all have done for us--both large and small. From the letters, cards and overly generous gifts, to the funny jokes and warm meals. We are all very sad to have left our friends in the DC area. These friends were all so wonderful to us both before and after this happened. The move has also clearly taken a toll on Hayden and Jordan, who are both quite homesick. But we are moving forward, and into the arms of other great friends and family.

Natalie's cousin Tracy, and his wife Heather, greeted us with a fully stocked apartment and a hot home-cooked meal on the stove. Hayden, Jordan and Isabella forget their homesickness immediately when they see their cousins, Madison, Chandler and Charlie, whose parents (Paige and Charles) have already taken huge steps to make us feel at home here. Of course nobody deserves more credit than Momma Kik. Even though she's only an hour from home, she hasn't been able to make it there, since Isabella and Jordan both think she's their mother and father rolled into one. And we owe a huge debt to Poppy, who has so generously loaned us his wife when his own father has been quite sick and he could obviously use some more of the loving spirit she has brought into our home.

Well, enough sentimental rambling. You probably want to know what is going on.

As we mentioned before, Hayden has relapsed. Yesterday she began a round of chemotherapy that was added to her treatment to reduce the leukemia before the transplant begins. She was supposed to be having testing done on an out-patient basis, but instead she is in the hospital. On most days she gets a pass and gets to come home for about four hours. She loves this, but hates going back to the hospital. Although she is still emotionally very strong, it is clear that the duration of the hospitalization (together with the introduction of another unfamiliar hospital) is taking a toll on her spirits. Fortunately, the best therapy has been her cousin Chandler, who cheers her up with her very presence. She has been to visit Hayden almost every day at the hospital, where they set up booby traps for the nurses and get into other fun mischief.

Although the leukemia is back, the relapse has not had a physical effect on Hayden, and she feels pretty good right now. After this week she will begin a week of TBI (a nice way of saying total body irradiation). She will have to sit still in a room for 20 minutes two times a day for five days while her body is irradiated. On Thanksgiving Day she will only receive one dose. The following week she will do another round of chemotherapy. The actual transplant is planned for December 1, 2004. We will try to keep updating you. In the meantime, give someone you love a big hug and kiss. And then, do it again!

With love,

Hassan, Natalie, Hayden, Jordan and Isabella

Tuesday, November 9, 2004 8:12 PM CST

We have been welcomed to Duke with some pretty awful news. Hayden has relapsed.

We do not know the full extent of her relapse yet, but it appears that her overall "tumor burden" is relatively light, suggesting that the relapse is not incredibly aggressive. At this point we still intend to go forward with the transplant soon. The other option is to undertake another round of chemotherapy to try to get her into remission before we do the transplant. Hayden is being treated by the most experienced and esteemed transplanter in the country, and we are also consulting with other leading figures as we try to decide what our next steps will be. I don't want to spend too much time dwelling on statistics and studies, and I recommend that you try not to get bogged down in trying to figure out exactly what this means. It is a challenge. And we will overcome it. Because there is no other choice.

Your thoughts, prayers, and postive energy during this trying time are greatly appreciated.

If you want to contact Hayden, you can reach her by mail at 53 Travertine Lane, Durham NC 27703. Or you can leave her a note in her visitors log.

Wednesday, November 3, 2004 9:17 PM CST

In light of our previous journal entry, I expect you will all be surprised to learn that we've decided to take Hayden to Duke for the cord blood transplant. We are leaving on Sunday, and she will start the pre-treatment tests on Monday. We will be using the cord blood unit from Dusseldorf, and we are very confident that Duke is the right place for us, notwithstanding the rough start that I described earlier.

I went to Duke with my good friend James Hanna (who also travelled to Minnesota with me) and spent several hours with Dr. Kurtzberg, and several hours meeting other members of the team and touring the facility. In the end, I am satisfied that the concerns that I had with Duke and Dr. Kurtzberg have been ironed out, and that Hayden will receive excellent care at Duke. Although we were incredibly impressed with Dr. Wagner and the U. of Minn., we believe that one of the most important factors is keeping Hayden's spirits high. And we had real concerns about taking her so far from home, her friends and her family.

We are starting this next phase of our journey with great hope. At the same time, we are very sad to be leaving our community and friends for so long (We expect that we will be away for about three to six months). In the meantime, our North Carolina family and friends are already helping us with the transition.

Please keep Hayden in your thoughts and wish the best for her. Your love strengthens us all, and in the end I believe it is this strength that is going to carry her through this ordeal.

Love,

Hassan, Natalie, Hayden, Jordan and Isabella

p.s. If you know anyone with Duke basketball tickets . . .

Tuesday, October 26, 2004 8:29 PM CDT

The last few days have been pretty bad for Hayden. Her rash is all over her body, and has come together into one giant red/purple area on her back and stomach. They have ruled out a virus, and believe it is an allergic reaction to one of her antibiotics. She has been running a relatively steady and high fever, and is itching on and off quite a bit. She is on antihistamines, and is going to get IV steroids tonight. Dr. Shad was hoping to avoid the steroids because they supress the immune system, and can open the way to fungal infections. But at this point, we need some heavy artilery. She's holding up pretty well under the circumstances, but is pretty miserable. I am pretty confident that these steroids will kick this thing in the ass. We'll let you know as soon as the rash subsides. Love,

Hassan, Natalie, Hayden, Jordan and Isabella

Tuesday, October 26, 2004 8:29 PM CDT

The last few days have been pretty bad for Hayden. Her rash is all over her body, and has come together into one giant red/purple area on her back and stomach. They have ruled out a virus, and believe it is an allergic reaction to one of her antibiotics. She has been running a relatively steady and high fever, and is itching on and off quite a bit. She is on antihistamines, and is going to get IV steroids tonight. Dr. Shad was hoping to avoid the steroids because they depress the immune system, and can open the way to fungal infections. But at this point, we need some heavy artilery. She's holding up pretty well under the circumstances, but is pretty miserable. I am pretty confident that these steroids will kick this thing in the ass. We'll let you know as soon as the rash subsides. Love,

Hassan, Natalie, Hayden, Jordan and Isabella

Sunday, October 24, 2004 8:30 AM CDT

This has been a very busy week for our family so there hasn't been much time for updating. Hassan went out to MN this week to meet with Dr. Wagner and to visit the hospital. It was a great meeting in that we were able to get a lot of answers to our questions - some of answers we liked and of course some we didn't. He seems to be an excellent Dr. and we were very impressed with his optimism and expertise in the cord blood transplant world. To some extent Hassan and I continue to wonder which is the best hospital for Hayden. I think Hassan will probably go down to Duke to meet with Dr. Kurtzberg this week.

We still do not know at this point if transplant is the treatment for Hayden. We will know more about that once they do her bone marrow biopsy which will be after her counts start to come up. We are still waiting! Although we have spent many hours agonizing over whether to go to transplant or not, it can only be decided for certain once we get the info back on her biopsy. Then we will have a very short time to actually pack up, get to the hospital and prepare Hayden for the transplant.

On Friday she developed a rash on her body and the Drs. are still trying to pinpoint exactly what it is - possibly a virus. This could cause her counts to be a little delayed while her body fights this virus. Luckily,it is not an itchy rash and so far she has only had a low-grade fever associated with it. We are hoping that this will run its course and her counts will come up so she can come home soon.

Our family continues to appreciate every helping hand. Please know that these favors help us get through every day and without our friends and family we could not do this.

Love,
Natalie

Sunday, October 17, 2004 9:30 AM CDT

The Light the Night event last night was absolutely fantastic. Thanks so much to those of you who contributed, walked and organized this wonderful event. You raised over $10,000 for the Leukemia and Lymphoma Society. It was so great to see so many of our friends together last night. The kindness and love you have shown us is really inspiring. Hayden was having a blast with Poppy and Mama Kik, and when I returned to the hospital, I was greeted by a Halloween fun house, with decorations that they worked on all evening. She's really looking forward to seeing pictures and the video from the event.

On the news front, the picture has changed pretty dramatically in recent days. As many of you know, we were leaning strongly towards going to Duke for a cord blood transplant with the outside possibility that we might find a bone marrow match with her cousins. So far Tristan and Liam are not matches, but we are waiting to hear from the results of Bijan, Walker and William, who all bravely gave blood for the testing. Although the results are expected back next week, this is a long shot.

With respect to Duke, we were really positive about going there, because of our family in the area, its outstanding reputation, and our obvious Duke connections. As part of the process of confirming our decision, we sought a second opinion from John Wagner at the University of Minnesota, who is a pioneer in cord blood transplanation. He took Hayden's genetic typing data and the cord blood units identified by Duke. All three units identified by Duke matched Hayden in 4 out of 6 relevant antigens (4/6 matches). It took Duke almost a month to even find these units. One day after he had the genetic information, Dr. Wagner found two cord blood units from Germany that were 5/6 matches with Hayden. In addition to having a better genetic match than the units identified by Duke, one of the units has a much higher cell dose. These two factors (HLA match and cell dose) are correlated heavily with the success of cord blood transplants. These units come from a blood bank in Germany, which is one of only four cord blood banks in the world accredited by FACT, the "gold standard" in cord bank accreditation.

It turns out that Duke did not do an international search, even though they told us repeatedly that they had. And Dr. Kurtzberg, the head transplanter and the head of Duke's own cord blood bank, told us that there were problems with units from Germany, but that she couldn't share them with me because these problems were confidential. We were obviously very concerned, and checked with the doctors at the National Cord Blood Bank in New York (also FACT accredited). They assured us that the Dusseldorf bank was an excellent bank and that they knew of no problems with the cord units from that bank. Moreover, they were also surprised to learn that Duke had chosen a unit from its own bank as the first choice for transplant when another unit from the National Bank had a higher cell dose and was also a 4/6 match. Indeed, the New York unit had two "blank" antigens. This means that it is technically not a mismatch, and limited experience with this type of unit suggests that it performs as well as a perfect match. In light of this, it is really quite shocking that Duke would push for its own unit.

When I pressed Dr. Kurtzberg for details on her secret reasons for believing that using the unit from Dusseldorf was "very dangerous," she deflected the question and said we need to trust our doctors. And she then said she would use the Dusseldorf unit if we wanted and use the Duke unit as the backup. Of course this raised several questions. First, if it is so "risky," and "dangerous," (her words) why on Earth would she ever use the unit? Second, why is the Duke unit the backup instead of the unit from NY with a higher cell dose. In the end, these questions have destroyed our trust in Duke's transplant program, and we could never feel comfortable with them performing the transplant.

On the other hand, Minnesota has an amazing program, and we feel very comfortable with Dr. Wagner. I am going to Minnesota on Wednesday to meet with him and check out the facility. Obviously it is less than ideal to spend four to five months in Minnesota (especially during the winter) far away from friends and family. But we think this is the right decision for Hayden. We will keep you posted--send warm clothes!!

Sunday, October 10, 2004 6:09 PM CDT

Hayden finished her third round of chemotherapy late last week. She has been feeling well so far, with only one day of serious nausea and throwing up. Her ANC is down to below 500, and she should be neutropenic for about ten days. As always, Hayden's spirits are very good. And she is actually pretty excited about the possibility of going to Duke for a Bone Marrow/Cord Blood Transplant. I think she is up for any kind of change of scenery. We are still not sure how we will proceed on that front. We have a 4/6 cord blood match, and Jordan and Isabella are both 4/6 marrow matches. There are benefits to using a relative donor, but also benefits to cord blood. We are also waiting to get the blood test results for Tristan, Liam, William, Walker and Bijan--the cousins who have the greatest chance of sharing Hayden's antigen makeup. In the unlikely event that one of them is a 5/6 or 6/6 match, the choices would change again. The anxiety of not knowing what we are going to do is maddening, but we still very optimistic.

We will let you know as soon as we learn more about what the next stage of Hayden's treatment will be. Thanks again for your thoughts, prayers and love. It strengthens us and fills us with warmth during very cold times.

Saturday, October 2, 2004 7:27 PM CDT

Sorry it has taken so long to update but it has been a busy and exciting week. Hayden didn't go back to the hospital until Friday to start round 3 of her chemo. She had her biopsy on Monday and we were told that she was in an excellent remission - only 2lasts. We have still not gotten a definitive answer on the chromosomal abnormality yet. They are not sure if it is an abnormality that just exists in her body on a very small percentage of her cells and has nothing to do with the leukemia or if it is indeed a chromosomal abnormality that is associated with the leukemia. The answer to this ever so confusing info could be the reason why we decide to go to transplant or not. Hopefully we will find out soon.

Hayden had a great time at home with her sisters. She felt great and played just the way she always has. She got a chance to go to Wyngate and see her classroom and she even went to pick up her favorite meal with me at Mama Lucias. It was wonderful having her home.

Anyway, she started her round yesterday and it appears as if it is going to be a tough one. The dosage of Ara-C is 10 times more than the last round. She has had a pretty bad day - nausea, vomiting - but Mama Kik showed up just in time to cure a lot of these problems. Thank God for my mom!!! The treatment will be 7 days this time and she will be receiving a drug that she has not received yet. Her counts came up very nicely this time. I think her ANC went from 960 on Wed morn. to 2700 on Friday morning. Thats amazing!

Please make sure you visit Hayden's Light the Night webpage - the link is below (just click on it) We are very excited about the amazing participation that we have had so far. I know we can reach our goal! Thanks everybody who is making this possible!

Thanks to everyone for all of your help!!!

Love, Natalie

Saturday, September 25, 2004 12:09 AM CDT

Hayden has been having a great time at home with the family! We woke up this morning to an amazing sign in front of our yard from Hayden's soccer team, the Green Dolphins. She loved it!! Thanks guys. Then we played outside for a while, trying to get as high as possible in the tree swing. Later, I took the three girls for a ride in the convertible, and we had a blast. We just got done cooking on the grill (which I set on fire since I am so out of practice) and are relaxing for a bit.

Hopefully we'll see many of you at the block party tomorrow, but unfortunately, we won't be able to stay long since Hayden isn't supposed to be around a lot of people.

We want to thank Mary Murphy, Ellen Burgess, Nancy Harper, Christine Federman, Julie Kennon, Elizabeth Gefke and Sue Soler for setting up Hayden's Light the Night team, Hayden's Heroes. And thanks to everyone else who is participating in this great fundraising activity for the Leukemia And Lymphoma Society. We have inserted a link to Hayden's website below if you are interested. Have a great weekend!

Thursday, September 23, 2004 10:02 AM CDT

I just wanted to let everyone that Hayden came home yesterday! She will go back to the hospital on Monday to have her bone marrow biopsy and intrathecal chemo for round 3. She is soooooo excited to be home! Jordan and Isabella have been playing with Hayden nonstop! As always we are not allowed to have any visitors at home and we aren't allowed to take Hayden anywhere except outside. I wish all of you could have been here to see the "big hug" that all 3 girls joined in when Hayden came home. It brings tears to my eyes just to write about it. I will cut it short so that I can spend every minute with her. Enjoy your weekend - I know we will!
Natalie

Friday, September 17, 2004 9:27 PM CDT

I haven't had much time this week for writing but I will try to give a quick update. As soon as I wrote the last entry on Sunday,Hayden spiked a fever and they had to start her on several antibiotics just because we never know when its an actual infection because of her low immune system. Although the fever was low-grade it did seem to persist for a few days. The blood cultures have showed no signs of infection so they discontinued the most powerful antibiotic today. Hayden still has 2 sores in her mouth that are pretty uncomfortable so she is having a difficult time eating. We are hoping she will be feeling better soon because it is almost time for her counts to start rising. This means her sores will heal and she will hopefully not need anymore transfusions until her next round.
Hayden's spirits are high because she is hoping to come home for a few days once the counts go up. She has been busy trying to think of a good name for her Light The Night team and she has been even busier tring to get to level 3 on her Spongebob gameboy.
I will update again soon. Thanks for all of the help, support and of course the meals. We really do appreciate all of the hard work that Ottilie Droggitis and Christine Federman have done to ensure that we have a great meal in our home several times a week. We also want to say a special thank you to Peggy Hanna - I don't think tomorrow would be possible without her!!! Thanks a ton!!!
Natalie

Sunday, September 12, 2004 8:17 AM CDT

Hayden has had a relatively good week. She had a little bit of the mucositis that goes along with chemo earlier in the week but it never really got that bad. So far she has had no fevers or vomiting this round. She actually only had to receive 1 dose of morphine and the next day the pain seem to have gone away. She also received a platelet and a red blood cell transfusion but that was to be expected since the chemo wipes out the good and bad cells. Hayden has had an ANC of 0 since Friday so once again she can't fight ANY infections. She will probably remain this way for another week or so and then her counts will slowly climb and she will receive another bone marrow aspirate. Hayden is actually receiving no medication right now. She has to rinse 4 times per day with an antifungal mouthwash and an enzyme rinse to keep her mouth clean. She has not been allowed to brush her teeth since she got to the hospital on July 20, but these rinses seem to do the trick.

Hayden has been in great spirits! Because she has had a taste of home, she has ask more questions about home this round. She gets frustrated sometimes but for the most part she is easily distracted. For example, yesterday the Penn State Soccer Team came to visit her and brought her a tshirt and poster. One of the kids that had AML that used to occupy Hayden's room is a player on the team. She really enjoyed this almost as much as Jordan who was not even there. She has also been very busy with her tutor, Ms. Roffman, who is coordinating with her Wyngate school teacher, Mrs. Miller. She gets 6 hours of instruction per week.

Jordan and Isabella are going to visit her today. She hasn't seen them all week because Jordan had a little sniffle earlier this week. You can never be too careful.

For those of you who do not know, their is a walk and fundraiser that is sponsored by the Leukemia & Lymphoma Society called Light The Night Walk. This is an evening walk that friends and neighbors can participate in to raise funds for lifesaving research for leukemia, lymphoma and myeloma and to provide help to patients and their families. The website is www.lightthenight.org I would like to find one of our friends who would be interested in organizing a team of friends, neighbors, kids etc. to walk for Hayden. Obviously, we will not be able to make it. The event for Montgomery County takes place on October 16 at 6:30 PM at the Montgomery County Fairgrounds. This is only a short relaxed walk that kids can participate in and there is no exercise or fitness requirement to participate. I have a brochure with more info if you are interested. Paige is also organizing a team in Raleigh, NC so for those of you in NC please consider this. I will put the website that Paige has created in the next journal.

Please keep us in your daily thoughts! Hayden sends her love to all of you!

Love,
Natalie

Tuesday, September 7, 2004 6:25 PM CDT

Hayden finally finished her 2nd round of chemo on Friday. We were very lucky because it was very uneventful - no fevers, no vomiting and a little bit of nausea. We are waiting for her counts to once again climb down at which point she will be very susceptible to infection. Unfortunately the chemo drug, Ara C, that Hayden has had 36 doses of so far has a cumulative effect and one of the most common side effects is mucositis. Basically, this is really painful sores in the mouth and the lining of the throat and gut. Apparently this is very painful and this is really just beginning for Hayden. Previously she was given Fentanyl for pain and this worked well but only lasts for about 1 hour. Now they have decided to give her Morphine because it lasts about 4 hours. Anyway, when she is given the morphine she is comfortable and able to eat.

We have also recently learned that is there is a strong possibilty that Hayden will need a bone marrow transplant due to the possibility of a chromosomal defect that they THINK might have identified. We will not know for sure if it is present or not until the next biopsy is performed at the end of the cycle (end of September). Please keep your fingers crossed! If this particular defect is found then Hayden will definitely need a transplant. Hayden has a few cousins which we will soon be asking them to be tested for possible matches for Hayden. We also plan to try to get more people involved by signing up to become donors especially relatives and other people who share our ethnic background.

We are still taking it day by day. Sweet little Hayden is such a trooper. She has just been wonderful throughtout this entire process. She has taken a particular interest in Mary Kate and Ashely Olsen from Full House. The library at the hopital has a lot of their movies and she just loves to watch them. She has even decided that for her "wish" from the "Make A Wish Foundation" she wants to meet Mary Kate and Ashley, spend the day with them and be in their next movie. She is so cute!

Love,
Natalie

Wednesday, September 1, 2004 8:37 PM CDT

Today is day 6 of round 2 and so far no fevers or major issues. She has two more days to go and then we will just be waiting for her counts to go down. Her wbc has started to go down but her anc remains about the same. The doctors say that this is normal and it will start to go down soon.

Hayden had her first day of school today! She really liked the idea that school came to her and she didnt have to get up early to go there. As a matter of fact she didnt get out of her pajamas until 9:30 and teacher arrived at 10:30. She played a few games with her teacher and did some reading but nothing too hard on the first day.

Hayden has received some amazing gifts! Most recently she received the most adorable puppets from Lucy Long in NC. Hayden has spent much of her day playing hospital with her new puppets - Dr. Dan, Nurse Nancy, Robbie (Hayden says he is the resident) and Lady. Thanks so much Lucy - I wish you could have seen that smile!!! Dr. Hayden also received a doctors kit with many supplies from her Nana. Although the bag had lots of things a doctor might need, Hayden has managed to find a few more things in her room that the nurses proabably won't miss. Thanks for all of these wonderful things that brings smiles to her beautiful face! We'll update again soon!

Natalie

Friday, August 27, 2004 2:19 PM CDT

It's been a really busy week! We had Hayden home on Tuesday for the day and she went back on Tuesday night. She was having a little pain from her biopsy but nothing that a little tylenol or maybe fentanyl wouldn't take care of. We just had her home on a day pass which meant that she did not have to be discharged and we did not have to move out of the room (trust me this is a hard job - she has received a lot of gifts). On Wed. her ANC was still around 700-750 and we need an ANC of 1000 to start her next round of chemo. So, guess what? - They sent her home! They actually discharged her again, so we packed up again and brought her home around 10PM just in time to wake up the birthday girl and enjoy a few hours together on Jordan's actual birthday. Hayden had made her a special gift at the hospital. She made her 2 adorable clay seals with balls attached to their noses. She also made her 2 clay caterpillars. Hayden was almost as proud of these gifts as Jordan was.

Hayden was home until Friday morning at which point she was supposed to go back to the outpatient pediatric oncology clinic to have blood drawn to check her counts. Her ANC was 1350!!! We are SOOOOOOOOOOOOOOOO excited!!! They will start her second round of chemo today. This will be an 8-day cycle. The same meds will be used in the same dosages just a shorter cycle. Hopefully, this round will be a smooth as the last.

This is a very exciting day for our family but at the same time a tough day. I took Jordan for her Kindergarten orientation today and also got a chance to meet Hayden's teacher for 1st grade. Jordan was very excited to meet her teacher, to be in the exact same classroom that Hayden was in and just to be starting school in general. On the other hand, I can't describe to anyone how difficult it was to walk into Hayden's classroom and see her own desk with her own name on it without her holding my other hand. She has three very good friends that will be in her class (Kelly, Carly and Ramsay) this year and I thought how happy Hayden would be to see her classroom, her friends and just to be here to experience this. I thought the news of her friends would excite Hayden but then I thought that maybe I should not even tell her because I don't know if she will ever be a student in this classroom. Mrs. Miller was wonderful! I feel that she will be a great teacher to have to help Hayden during this very difficult time. The mixture of emotions was a bit overwhelming so I did not stay in Hayden's class very long but I decided to make it more Jordan's Day (she feels as though she dosen't get very many of those). So, Jordan has decided that she will go to kindergarten afterall even if it is without Hayden for a while. She even claims that she wants to kiss n drop on the first day. I think Jordan will be fine!!!

Love,
Natalie

Monday, August 23, 2004 8:54 PM CDT

It was so amazing to have our entire family under the same roof again! Although it had only been a month since we had taken Hayden to Georgetown it seemed like forever. The girls were so so so excited to see each other. After an absolutely wonderful weekend with the girls we packed our bags and headed back to Georgetown to have Hayden's bone marrrow biopsy.

They completed the biopsy and the intrathecal (in the spinal cord) chemo. this morning shortly after moving back into 5314. Hayden gets chemo. in her spinal cord at the beginning of each cycle. We didn't get the results back from the biopsy until late this afternoon but they were really worth the wait. Hayden had less than 3% blasts in her bone marrow!!!!!!!!!!!! This is about the # of blasts that you and I have in our bone marrow. She is currently in complete remission. The doctors are just thrilled with the way she is responding and they say that the results cound not be better. She will start her next round of chemo. (we think) on Wed. if her ANC continues to rise as expected. They also told us that Hayden is free to come home for the day tomorrow!!! They will give her a pass for the day so that we do not have to check out and readmit her. So I guess you know what we will be doing tomorrow - Enjoying our girls!!

Love,
Natalie

Friday, August 20, 2004 4:58 PM CDT

Yesterday, Hayden's ANC count was high enough that she was able to leave her room and walk outside for the first time since she got to the hospital. At the end of the evening she said it was her best day ever at the hospital.

Today, however, is even better. Her ANC was over 500 this morning, and they let her go home for the weekend. She has been ecstatic, as have her sisters. Isabella keeps saying, "I'm happy." And when we ask her why, she says, "'cause Hayden."

We have to return on Monday, when Hayden is going to have another bone marrow test. She was dreading it, but I think having this weekend at home has totally taken her mind off of it.

Unfortunately, Hayden's immune system is still incredibly low. So we are not going to be able to have any visitors until she goes back home. We are just going to hang here together having a nice homey weekend, washing our hands every hour or so!

Again, thanks to everyone for your continuing support. Special thanks to Alan for getting Pasha groomed and making a valiant effort to get my emission inspection done--I know I have that registration card somewhere! And thanks to Gregory for taking on the trashman job, and to neighbor extraordinare Ottile for setting up Hayden's tutoring. Thanks again to everyone for the great meals, and I owe an apology to Lindsey Buss who tried valiantly to bring us dinner on Sunday--I was lonely and made Natalie bring the girls to the hospital for an evening visit. I'm sure we missed a great treat--I keep imagining a slab of Texas ribs!

With love and gratitude,

Hassan, Natalie, Hayden, Jordan and Isabella

Thursday, August 19, 2004 9:28 PM CDT

We have had a wonderful day!!! Hayden's counts are up, she is feeling great and Dr. Shad allowed her to leave her room for the first time this evening. Hayden had an ANC of 217 this morning and platelets of 294,000 so her doctors allowed her to walk outside of the hospital to feel the sunshine on her face for the first time. I can't even tell you how happy she was. She ran around and around in circles and we couldn't even catch her. She was not used to wearing shoes so she kept tripping over her shoes.

Hayden's doctors are pleased with her progress and how rapidly her counts are going up. They have postponed her bone marrow biopsy until her counts are a little higher - probably Monday. This will confirm what we think is happening in the marrow (all healthy cells and less than 5% blasts). Once that is confirmed then we will start another round of chem. This will be an 8 day cycle with the same drugs that she was given last round.

Thanks everyone for all of your messages, gifts, cards, meals and most importantly your love and support.

Natalie

Monday, August 16, 2004 8:37 PM CDT

Hayden's counts are finally starting to come up!!!! Today she actually had an ANC of 24 (Absolute Neutrophil Count) and a platelet count of 97. This is good news! This tells us that her bone marrow is starting to create new infection-fighting cells and as this happens she is not as susceptible to infections. She hasn't had a platelet transfusion in over a week so the platelets that we see in her counts are being produced by her body. Our next big hurdle is to find out if we still have less than 5% blasts in her marrow. She will probably have a biopsy on Wed. of this week or maybe towards the end of the week (it depends on her counts).
Hayden is still is good spirits. She told us just yesterday that she really liked this hospital because the Doctors and nurses were so nice. I would have never expected my little Haydie to handle this situation so well. She has been amazing!!! The Doctors and nurses at C53 think that she is just an angel. I couldn't agree more!
Love, Natalie

Monday, August 16, 2004 8:37 PM CDT

Friday, August 13, 2004 8:54 PM CDT

It has been a very eventful week for Hayden and her family. On Monday night I took Isabella and Jordan to Bethany Beach so that they could spend a few days with their cousins, Tristan & Liam. They were excited about the trip, and it was a good break for them.

In the meantime, Natalie and Vicki spent the week with Hayden, who taught the doctors at Georgetown a thing or two about medicine. She wrapped Vicki up in gauze and medical tape, attached a central IV line to her chest (by taping a straw to her) and donned a surgical cap and stethescope. The doctors and nurses from all over the floor came to see how practicing medicine should really be done!

Hayden has really turned a corner with the staff here. She is opening up quite a bit and has gone from being afraid to speak to playing actively with the doctors, nurses, and other staffers. She loves physical therapy with Jessica, where she gets to bowl, walk on stilts, and play other really fun games. She like to do magic for Dr. Jason, who is still in awe of her magic wand tricks. And she thinks really looks forward to her sessions with Tracy, her art therapist from North Carolina. As impossible as it seems, Hayden is still in excellent spirits.

Visits from friends and family (especially her playmates) have been great fun for Hayden. Callum, her friend from Nursery School two years ago, came over to play on Tuesday and they had a really great time. Her other visitors have included Emma and Kelly from her class, Tara from Gymnastics, Sarah and Ramsey from the neighborhood, and her cousins from North Carolina. The West Virginia crew is rolling into town tomorrow, and they are very excited to see Hayden and play with her too! Hayden loves visits from her friends, especially during the week when family is often not in town. So if your child is healthy and wants to come visit, let us know, Hayden would love it!

Hayden also achieved some celebrity status today. This morning when we were flipping the channels to find cartoons, I stopped on a news report of Peter, Paul and Mary singing. A nurse named her IV Pump "Puff" on her very first day in the hospital because we were singing the Puff the Magic Dragon song. So she has been talking about the song and Puff ever since. PP&M were singing the song on the news, which said they were coming to Wolf Trap tonight. But we caught the report late and missed most of the song. So I called the station, and spoke to a producer, and told him Hayden would love for them to sing the song to her. Around six p.m., Peter and Paul called Hayden, told her they were thinking about her and sang a special rendition of the song to her. They also promised to send her a tape of tonight's concert. We can't wait to see the tape.

With respect to her medical condition, the indicators are very positive. As we've mentioned earlier, she is responding very well to the Chemotherapy. We have also recently learned that her bone marrow is definitely producing monocytes, which are the early generation healthy white blood cells. This is also a positive development, because it means that her bone marrow is recovering from the chemotherapy. She has another bone marrow biopsy on the 18th, and if everything looks good, they will start the second stage of induction chemotherapy soon afterwards.

We still do not know whether Hayden will require a bone marrow transplant. But we just learned that one of our two insurance policies would cover a transplant at Duke, which has one of the preeminent bone marrow transplant centers in the country. Of course this coverage comes with lots of strange rules and conditions, many of which make absolutely no sense. But at least we have some comfort that if we need to go that route that it is a viable option for us, at a facility that has the necessary expertise and knowledge. While we appreciate the many kind offers many of you have made to be tested for a possible match, a non-family donor is so rare that this would not be worthwhile. Instead, they do a search from national databases of cord-blood and live donors. (As an aside, if you are about to have a child, you can elect to have your child's cord-blood saved. There may be a cost associated with this, and the doctors and hospital may not be able to adequately explain the importance of this. But I cannot stress how strongly I would recommend you do this. It could save another child's life.)

We may, however, hit up any of you that have Hayden's unique genetic background: one half Caucasian, one quarter Iranian, and one quarter Italian. Right now, the only people we know who fit that match are her cousins Tristan and Liam, and we'll wait to see if Duke thinks it is worth doing a typing before we ask them to give a blood sample.

As always, I want to thank all of you for reading this update, thinking of us, and supporting us all in your own unique and thoughtful ways. The cards and letters have been fantastic, the food people keep bringing over is great, and we don't know how we'd cope if so many folks hadn't picked up so much slack at our home by running errands for us and helping us with Pasha. Some folks have set up a play date for Isabella and Jordan tomorrow morning at 10 a.m. at Alta Vista Park, in Bethesda, and I am looking forward to seeing many of you there.

We are going to try to put some new pictures up, but we are somewhat technologically impaired, and have precious time to spend cursing at a computer. With Danny's able assistance, however, we intend to have some great new pictures on the web soon.

With love and gratitude,

Hassan, Natalie, Hayden, Jordan & Isabella

Sunday, August 8, 2004 4:33 PM CDT

Sorry we didn't get a journal entry in yesterday but Hayden has had a busy weekend. Aunt Paige, Uncle Charles, Maddie, Chan and Charlie came up for a visit. I can't think of anything that could have made Hayden any happier than to get to spend time with Chan. They claimed that they were going to "get in trouble" all weekend but unlike most times they are together there was nothing they could have done to make me mad. They had a great time mixing hospital products together to make a "magic potion", watching movies and doing exams on each other as well as on Dr. Gonzalez. Hayden couldn't have been happier!!!
Hayden's Dr. says that she is doing better than she could possibly hope for at this point. We are still waiting for her counts to come up and we are waiting on info. about Hayden's HLA typing for possible bone marrow donors. Unfortunately, Jordie, Izzy, Hassan and myself were not matches for bone marrow donors so if Hayden does need a bone marrow transplant(this cannot be determined yet) then it would probably be from the National Bone Marrow Registry.
Hassan and I would like all of you to know how much we appreciate everything that you are doing. We could not get through this without the warm support of great friends and family. Love, Natalie

Friday, August 6, 2004 9:56 PM CDT

It has been a pretty quiet day at C53 today. Hayden's Dr. says that she is doing well and we are just waiting for her counts to start going up. She spent last night helping her father shave his head to match hers. (Hassan almost lost an ear). From what I hear Jordie, Izzy and myself are the only ones with any hair - I haven't seen it yet. Hayden says Daddy has an egghead ( I will let you know). Anyway, I thought I would ask any of you guys if you know where I can get a kid size nightcap and an adult size nightcap? They say their heads are FREEZING!!!!!! Any ideas? We will let you know when we have more news. With Love, Natalie

Thursday, August 5, 2004 9:39 PM CDT

Hayden got off to a rough start this morning because she was not allowed to have anything to eat or drink as of midnight Wed. She was scheduled to have a bone marrow biopsy at 11:00 AM and was not allowed to eat or drink because of the IV sedation. Hayden has had a pretty healthy appetite in the morning since she has gotten over most of the nausea associated with the chemotherapy. So I somehow managed to hold her off from eating until after the procedure was over. The procedure went as planned with no complications. The purpose was to check the bone marrow for blasts (bad white blood cells). When Hayden was admitted to Georgetown, her first biopsy reavealed that Hayden had 78% blasts in her bone marrow and 91% in her peripheral blood. We were happy to find out today that, thanks to the chemotherapy, there were less than 5% blasts in her bone marrow and 0% in her peripheral blood. Finally some good news!!!! This is better than they had expected after the first Induction phase (they usually expect to find less than 20% in the bone marrow). We were very happy!!! This tells us that the chemo drug regimen that they are giving her is working for her. We will continue on with her treatment as planned and she will receive another bone marrow biopsy in 2 weeks. Meanwhile, we are waiting for her white blood cells numbers to climb and obviously fighting any possible infections.

Hayden has been in quite a bit of pain from the procedure so they are giving her pain medication which she seems to enjoy! She got to eat a very big breakfast/lunch after the procedure and she really enjoyed that almost as much as the pain meds. Hayden's hair is really starting to thin out which dosen't really seem to be a big concern for her. However, she hates the idea that this hair is constantly on her shirt and in her bed so she just takes her hands and runs through her hair and pulls out hand fulls and throws it on the floor - then she laughs. Not what I expected, but I laugh too. She said that she wants Mama Kik to shave her head tomorrow so we can be rid of the hair. I told her it was her hair - we will do whatever she wants. I also told her today that I could not wait to see her bald because it was going to allow me to see her beautiful face. Anyway, it's been a long day so I will go. I have two other little girls that need my attention now! Natalie

Wednesday, August 4, 2004 8:33 AM CDT

Hayden had a very fun day yesterday. She was very active and jumping around and laughing. Her sisters also came to visit her, and she and Jordan snuggled up on the bed together and watched a movie.

Jordan, Isabella, Natalie and I all gave blood samples yesterday so that the hospital can test them to see if any of us are matches for a potential bone marrow transplant. Jordan was incredibly brave, and barely blinked. Isabella was a bit scared, but was fine just a few moments later.

After her sisters left, Hayden played silly games with her grandmother, Mama Kik--most of which involved hanging a Groovy Girl from a string attached to a ceiling hook and making her jump up and down on top of Mama Kik's head.

After I got back from work last night Hayden sang me some songs and did some jumping jacks. Then she played with some of the great toys her friends have been sending her. This morning she woke up promptly at 6:30 to put together a floor puzzle, and she's enjoying a Sponge Bob Square Pants video.

It looks like she is beginning to lose a bit of her hair, but she is prepared for this, and doesn't seem too upset by it at all. She got a great haircut from Mama Kik and I've promised to shave my head when she loses hers.

Thanks to all of you for your great messages, I just read them to Hayden, and she enjoyed hearing from you.

With love,

Hassan, Natalie, Hayden, Jordan and Isabella

Tuesday, August 3, 2004 7:45 AM CDT

Thank you for visiting Hayden's website. We created this website because so many of our friends and family have expressed a desire for as much up to date information as possible about Hayden's progress. We hope to use this forum as a means of keeping everyone informed and to allow you to communicate with Hayden and her family.

There is so much that has already happened that it is difficult to explain everything, especially since our free time has become so limited. For example, I have already been interrupted four times since I started writing this by Doctors, nurses, Hayden's complaints of pain, and a business call. So I guess I hope you can all understand that we are not able to respond to all of your wonderful telephone messages and emails, for which we are extremely grateful.

Hayden was diagnosed on July 20, 2004 with Acute Myeloid Leukemia, Type 4. Her diagnosis was a result of great vigilance by her mother, Natalie, who noticed strange bruises on her body and brought her to her pediatrician. Hayden was not in any pain, did not have a fever, and had not experienced any bleeding, as most AML patients do prior to diagnosis. So I cannot express enough how grateful I am that Natalie ignored me and took Hayden to the doctor.

The pediatrician drew blood, and was unable to get a verifiable white blood cell count. So he instucted Natalie to come straight to the Georgetown University Hospital, where we met with Dr. Aziza Shad, who is the head of the Hospital's Hemotology/Oncology Department. After analyzing another sample of Hayden's blood, she informed of Hayden's condition. As you can probably imagine, this was one of the worst moments a parent can imagine, and the shock has not quite worn off. Her white blood cell count was over 220,000 (a normal count is in the 2,000-3,000 range). They immediately admitted her to the pediatric intensive care unit (PICU)and started making efforts to lower her WBC count. They wanted her WBC count to be below 100,000 before they began chemotherapy because the destroyed white blood cells (killed by the chemo) can cause damage to the liver and kidney. So the lower the count before they begin chemo, the lower this risk is.

While this was going on, Hayden was taken into surgery, where a central catheter line was installed into her neck so that blood and medication could be placed into her body more effectively than through the two IV lines she had in each of her arms. She also had a lumbar puncture to test for cancer in her spinal fluid (negative) and a bone marrow test.

Afterwards they began a process of filtering out the white blood cells from the rest of her blood. They did this by removing her blood, centrifuging it, and putting it back into her body. This was a pretty awful experience, particularly when her blood pressure dropped really low, causing somewhat of a crisis. Luckily, the PICU doctors are fantastic, and they, together with Dr. Shad, were there immediately to respond with a blood transfusion.

After two more days, her WBC count went down to about 70,000, and they began the chemotherapy. The chemo went very well for the first few days, with no significant side effects. On the seventh day she got a fever of over 105 degrees and was put back into the PICU. It appears that she did not have an infection, as feared, but that this was likely a side-effect of the chemotherapy. After a couple of days of nausea and vomiting, she has recovered pretty nicely. She is out of the PICU and back into her regular room.

Hayden is still having a little bit of nausea, but overall is doing pretty well. The doctors are very pleased with how she is responding, and the first phase of the Induction chemotherapy is over. Her WBC count went down to about 4,000 and we are waiting for her bone marrow to recover before we begin the next stage of chemotherapy (probably in about 15 to 20 days).

Right now, the biggest risk is infection, since she has no natural immune system left to fight of infection. I apologize for my very non-technical description of her condition and treatment, including terrible spelling errors. There are lots of websites with great information on AML and its treatment, and we will post links for your information as soon as we can.

I have to go, but we will try to make reports as frequently as possible. We would love to hear from you, so please post a message whenever you can, and we will pass along your thoughts to Hayden. Again, we cannot stress enough how grateful we are for your support during this trying time. It is a great source of strength to us when we need it most. With love,

Hassan, Natalie, Hayden, Jordan and Isabella

Sunday, August 1, 2004 8:35 AM CDT

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