about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  make a tribute donation

Click here to go back to the main page.

Saturday, August 20, 2011

This was written by a mom of a child with CP but it so accurately applies that I just had to share.


What I Would Tell You…….

© Copyright 2011 by Julie A. Keon. All rights reserved.

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Now online at www.WhatIWouldTellYou.com

© Copyright 2011 by Julie A. Keon. All rights reserved.

Wednesday, June 29, 2011

I hope everyone is having a great summer!

Here is a link to a great article about our friends, the McNeils. They have 2 adorable children with Sanfilippo Syndrome. Earlier in the year, their grandfather was featured on the show "Undercover Boss." It was a wonderful piece about the family and brought awareness to Sanfilippo Syndrome.

http://www.mcall.com/health/mc-health-mack-grandchildren-20110628,0,7748255.story?page=1&track=rss

~Cari

Monday, May 16, 2011

Thank you to everyone that came out for the Jog for Jessie yesterday! The rain held off long enough for a successful kids' Fun Run and 5K walk/run. We had more than 150 participants and raised more than $15,000 for research!

I was so happy to see so many local families, friends and family out cheering each other on!

Here is a link to the Patch article about the day: http://wayland.patch.com/articles/photo-gallery-sundays-jog-for-jessie-draws-more-than-150-kids-and-adults#photo-6094066

Here is a link to the results: http://www.coolrunning.com/results/11/ma/May15_Jogfor_set1.shtml

Cari

Saturday, March 19, 2011

Jog For Jessie
May 15, 2011
10am Kids' Fun Run (11 and under)
10:30 5K Run/Walk

Please come join us at Jessie's school, Claypit Hill School, for a fundraiser to raise money for Ben's Dream. It will be a great event for families, runners and supporters!

To register, copy and paste this link into you browser:
http://www.firstgiving.com/87485/Event/jogforjessie

Thanks,
Cari

Friday, January 7, 2011

Happy New Year!!

There is some exciting research being done on a gene therapy that could cure Sanfilippo Syndrome. Although this treatment would not be in time to help Jessie, it would prevent future families from having to face this heartbreaking diagnosis without a treatment.

Pepsi Refresh is granting money to worthy causes each month. Team Sanfilippo has entered the contest this month in hopes of winning $250,000 towards Sanfilippo research. We are asking you to support this effort by voting EVERYDAY for the next 25 days. We are currently in 3rd place and the top 2 finishers on January 31st will receive the funding!
You can vote multiple ways – USE THEM ALL!

You can cast 3 votes for us in 1 minute.


1) Text 105582 to PEPSI (73774)
2) Go to http://www.refresheverything.com/curesanfilippo
3) Vote via facebook by clicking this link and using the app. http://apps.facebook.com/pepsirefresh/idea/

Thank you so much for your support!
Cari

Tuesday, September 7, 2010

I am sad to see a wonderful summer come to a close. Jessie starts second grade today. She will be in the same self-enclosed special ed classroom and paired with the same teacher she had last year. Her teacher and entire class from last year "looped" so they all moved up to second grade together. She does have a new one on one aid this year, Jeanette, and she seems like she is going to be great with Jess. Carleen will be missed but we'll make sure we see her from time to time!

We ended the summer with Jessie's 8th birthday. She is still about the size of a 5 or 6 year old so it is sometimes difficult for me to remember she is actually 8 years old! She continues to do well for a child of this age with Sanfilippo, although we are beginning to see issues here and there. We have been trying for months to get to the bottom of one issue that appeared to be GI related but our doctors at Duke think she may be on the front edge of seizure activity. I was told that this is common for Sanfilippo girls as they enter puberty (which often occurs earlier for children with Sanfilippo). We will be seeing an endocrinologist in the next few months to discuss treating Jessie hormonally to slow the onset of puberty and, hopefully, delay any seizures. Jessie is also showing signs of nerve neuropathy in her right leg. She is probably having difficulty feeling the ground with her right foot when she walks. She is still walking on it so we are hopeful that she is not in pain. Tingling is often associated with this condition and I had thought this summer that she may be experiencing this sensation. Unfortunately, there isn't anything we can do to reverse this but we will do our best to keep her on her feet.

Dylan continues to be Jessie's biggest fan. He is so amazing with her and is able to connect with her on another level. He is most definitely her favorite person in the world. He greets her first thing every morning with a huge kiss and loves it when we all pile in our bed on a Saturday morning. I try not to think about the day that he realizes that he will someday lose her. I try to focus on today and the bond that they have now. Today, Dylan is blissfully unaware of what the future holds and sometimes I am so jealous of this.

Cari

Sunday, July 4, 2010

Happy 4th of July! Summer is in full swing. The kids had their first week of Pegasus (summer camp) and Dylan has had a week of swim lessons at the Wayland beach. This is the first summer since Jessie's transplant that she has been able to tolerate a lot of sun exposure. We have spent several hours every afternoon at the beach and she is starting to show signs of her first tan. She looks so good with a little bit of bronze! Our town owns a special beach wheelchair and we have used it several times on the beach and in the water. It makes getting around a lot easier on the sand. We are lucky to live in a small town that is very accommodating to children with disabilities.

About a week ago, we celebrated Jessie's 5th transplant anniversary. Even after 5 years, I am still amazed at how much she endured at such a young age. I looked at transplant pictures and took a trip down memory lane and I felt a pit in my stomach thinking about how much she went through. It is bad enough that Sanfilippo inflicts such pain on its victims but that she also went through the trauma of transplant--it doesn't seem fair.

In the past year, there has been some promising research in the study of Sanfilippo. These gains make me optimistic that one day there will be a treatment or cure for the disease. Sadly, I know future breakthroughs are unlikely to benefit Jessie, but that's no reason not to help however I can. I have decided to begin in the next year to work with Ben's Dream on fundraising to support research. I'm sure you will be hearing more from me on this in the coming months!

If you would like to check out Ben's Dream and their continuing efforts to fund Sanfilippo research, you can visit their website at www.bensdream.org

Cari

Saturday, May 15, 2010 National MPS Awareness Day

Wear some purple today for MPS Awareness Day!

Our friends made a video to help raise awareness today. You can visit their blog to view it and read about their wonderful children, Waverly and Oliver.

http://familymctravels.blogspot.com/

Cari

Thursday, April 29, 2010

I know I haven't really updated in a while. I guess it's because things have been pretty normal around our house. As a mother of a child with a degenerative disease, you are always striving for "normal." You go on with your routine. You do the shopping and laundry. You talk to your girlfriends about the latest gossip. You make plans and try to keep them. The problem is that you can so easily be jarred from your relaxed, normal state into a spiral of panic and worry. The underlying baseline of stress is never that far from the surface.

Watching for the smallest decline. Looking for a sign of regression. Vigilant to catch an emerging symptom. Scouring for a possible treatment or cure. Your "normal" world can be turned on its head in an instant.

You become an expert at looking normal on the outside, all the while wrestling with the stress that is just below the surface. When people see you in the grocery store and ask how things are going, you put on a smile and tell them how good things are today. You don't mention that you have been worried about your child's possible seizure activity or that there may be a promising treatment on the horizon that is being held up by politics, red tape and a lack of funding. You try to get excited when friends are raising money for cancer research, when really you wonder when someone might choose to raise money for your child's disease.

I don't want to sound so glum. I do have a lot for which to be thankful. I just wish things were as "normal" as they seem.

Sunday, April 4, 2010

Happy Easter!

"May a seed of hope burst forth where you least expect it."

We went to Easter Worship this morning and this was the blessing Jessie received in her egg. By no means have I given up on Jessie, but I think I am realistic about a cure for Sanfilippo during her lifetime. But then again, this would be a seed of hope in Jessie's mind and that may very well be fruitful.

Wednesday, February 24, 2010

Thank you to everyone that watched and voted for the Ben's Dream video! Unfortunately, Ben's Dream was not the recipient of the Extraordinary Measures Inspirational Quilt grant.

I believe that together we can create our own extraordinary measure. Over 1,000 watched the Ben's Dream video. If everyone who watched donated $10 to Ben’s Dream, we could raise $10K for research. Don’t let time run out, be extraordinary! Please consider donating today! Here is the link: https://www.networkforgood.org/donation/ExpressDonation.aspx?ORGID2=043565765

Wednesday, January 20, 2010

Please consider voting for "Ben's Dream, The Sanfilippo Research Foundation" in the Extraordinary Measures Inspirational Quilt contest. By voting for Ben's Dream's video, you could be helping to raise $10,000 for Sanfilippo research! To watch the video and cast your vote, see the link below. Jessie and Dylan are both in this great video!

http://extraordinarymeasuresthemovie.com/?videoId=253


Thank you from the bottom of our hearts!

(If the link doesn't work, you can cut the link and paste it into your browser's address bar.)

Saturday, December 12, 2009

Winter arrived late to Massachusetts this year but in the last week we have had our first snow and temps are in the 20s. It is now definitely feeling like Christmas. We have had our tree up since Thanksgiving and I have rearranged the lights in the window so that Jessie can't pull them down in excitement. She is more interested in the decorations this year, which is both wonderful and dangerous.

We are attending the National MPS conference next week at Disney World. It will be a great vacation and a wonderful opportunity to see some friends we only get to see maybe once a year. I feel blessed to have made some amazing friends in the Sanfilippo community. I don't know what I would do without these mothers. We share the tears, the joy and the heartbreak of Sanfilippo like we have been together since the beginning of time. In some ways, I feel like they are my family. I look forward to spending time with them in the sun for a few days before Christmas.

Jessie and Dylan are both doing well. Jessie is thriving in her new school. I recently volunteered for a program with the 4th graders in her school called "Just Like Me." I had the opportunity to talk with and educate these kids about disabilities. I was amazed at how many of them knew Jessie, even though she is a 1st grader, and had great questions about her disability. It was a rewarding experience for me and I think it was beneficial for them as well.

During this time of year, I can't help but think of the families that are not as fortunate as ours. It sometimes feels like nothing breaks our way but deep down I know we are blessed. Blessed that Jessie survived transplant and that it seems to be helping. Blessed that Dylan is healthy. So many families we know have lost a child or face a future of sadness and pain. My heart goes to them especially during this Christmas season. I pray they may find peace.

Monday, November 9, 2009

A few weeks ago, Jessie fell down the stairs. She quietly pushed her bed away from the wall at 5am, squeezed between the bed and the wall, and made her way to the stairs. I woke up to a loud crash and her cries. I immediately assumed she had made it over the side of the bed and had fallen out, which would have been a pretty good fall but nothing like going down the entire flight of stairs. When she wasn't in her room, I knew what had happened and tried to prepare myself as a went down the stairs to pick her off the floor at the bottom. Thank goodness she was okay. She had the largest goose egg on her temple but was really no worse for wear. Weeks later, she still has a bump on her forehead but it is getting smaller. We now have a gate at the top of the stairs.

When we bought this little house (1000 square feet) in one of the best school districts in MA, we had planned to stay for about 5 years. More than 6 years later, we have no plan to leave. We couldn't have predicted the fall of the housing market or the thousands of dollars spent on medical treatment, but now it seems this house is what we can afford in this school district. Sure, we could move to another town where housing prices are better and the schools are pretty good but that would jeopardize what Jessie has here. So, we are faced with what to do with this house to better accommodate Jessie and her special needs. Currently, her bedroom is upstairs. The bathtub is upstairs. The doorways were constructed in the early 1900s, so they are very narrow. I don't care how many bootcamp classes I attend, there will be a day when I will not be able to simply lift her in my arms and carry her up the stairs or to the car. I'm not ready for that day. Not physically and especially not mentally. I guess I have been in denial about how soon it will come and how we need to start preparing for it now. Making your house "handicapped accessible" is not something any parent should have to face.

Sunday, September 27, 2009

On Thursday, October 15, there will be a Benefit Concert at Johnny D's in Davis Square. A great event to support the effort to find a cure for Sanfilippo. Matt and I would love to see you there!

Here are the details: http://www.johnnyds.com/artist/arihest.html

Friday, August 28, 2009

We are coming to the end of a very busy summer. In addition to summer camp (Pegasus), playdates at the playground and mornings at the town beach, we had wonderful opportunities to see old and new friends this summer.

Our friends, the Clarkes, visited for a week from Virginia. We had a blast with them doing all the fun Boston tourist things that you never get to do when you live here. We also went to a picnic that our friends, the Siedmans, planned for local families with children with Sanfilippo. We met many new friends, including the Burkes, Sasha and her parents, and Joey and his sister and mom. It was a rare opportunity to have a relaxed conversation with 4 other families that all have children with the same disease. Thank you to Jennifer and Stuart for planning this great event!

We had our annual roadtrip to Duke. We were lucky to be able to combine it with seeing many friends. We stopped in DC on the way down to meet the McNeils. They have 2 children with Sanfilippo, Waverly and Oliver. It was a special weekend for me meeting this wonderful family.

At Duke, we met the Lopez family. They have 3 beautiful children, Hannah, Lucas and Aiden. Hannah and Aiden both have Sanfilippo and Aiden is almost 2 months post-transplant. He is the youngest child with Sanfilippo to be transplanted and is doing very well! We also spent the week catching up with Kirsten and Mo and all our Duke Hospital friends, all of which comprise our Durham family. Dr. Paul was especially touched by the friendship between Dylan and Jessie. It is truly amazing how Dylan can capture Jessie’s attention in a way no one else can seem to. Medically, Jessie is doing well with virtually no change since last year.

All of these connections mean so much to us. It is a very special bond that we share with other families with children with Sanfilippo. I know that they have provided much needed moral support over the years and I hope that I do the same.

Finally, and most importantly, today is Jessie’s 7th birthday. Dylan has been looking forward to it for the last couple of weeks. He has picked out her gifts and is anxious to decorate her cake. I know it will be a special birthday for all of us!

Thanks for checking in.
Cari

Wednesday, June 3, 2009

I just had to share the great news that Carleen, Jessie’s one on one for the past 2 years, will be moving with Jessie to the elementary school next year! Matt and I are ecstatic! Most importantly, I know Jessie will be thrilled to see Carleen again after the summer. Carleen has been amazing with Jessie. What really blows my mind is how Jessie does certain things for Carleen that she won’t do for anyone else. For instance, Jessie has this way of letting Carleen know when she needs to use the potty. They have some sort of nonverbal communication that I am not privy to. Jessie will use the potty for me but it is more of a hit or miss kind of thing—she certainly is not letting me know when she needs to use it. Also, Jessie could eat at the Four Seasons with Carleen. No mess, no fingers in the mouth…it is kind of crazy. I am just so thrilled to have Carleen as part of our family for another year! It makes this transition just so much easier.

Everyone here is good. Matt and I were able to enjoy our 9th wedding anniversary a couple weeks ago and we have a whole weekend away planned for the end of June. We haven’t been away as a couple since Jessie was released from the PICU shortly following her birth. I would say it is LONG overdue!

Saturday, May 23, 2009

Last Friday, May 15, was International MPS Awareness Day. Jessie and Dylan’s school planned a special celebration. Everyone in the school was decked out in their purple t-shirts to show their support. The Bunnies and Pandas had purple frosted cupcakes and then the Pandas gathered around Jessie in a friendship circle as we released purple balloons into the spring sky. It really touched my heart and I know Jessie enjoyed sharing the day with her friends. It will be difficult to say good-bye to The Children’s Way this June after 3 happy years wrapped in the cocoon of their love and support.

I told Carleen, Jessie’s one on one aide for the last 2 years, my wish would be that every child with Sanfilippo would have such a wonderful place to learn and grow. I know that Jessie has benefitted in several ways from their tremendous effort, patience and creativity. There are no words to express my sincere gratitude but I do know that I will never forget how they were able to touch her life (and ours).

Friday, April 17, 2009

We had a wonderful Easter in western NY with lots of old friends. Jessie and Dylan enjoyed seeing everyone and especially enjoyed playing with Eli and Oli, whom Dylan referred to collectively as “E-oli.” We had a brisk Easter egg hunt on Sunday morning with temps in the 20s and flakes of snow filling the air. I really don’t miss that weather.

Jessie has had a lot of routine appointments in the last few weeks. We saw her neurologist at the Lysosomal Storage Disease Clinic (referred to as the LSD clinic without irony). She was very happy with Jessie’s progress and is always eager to introduce her to the other doctors in the halls. As the happy little 6 year-old Sanfilippo child that was transplanted at Duke, she is a bit of a rockstar in clinic.

We saw our ENT and everything looks clear. She made it through the winter with minimal ear infections this year so we will not be putting tubes back in. We hope that she has finally out-grown the serial ear infection stage. It has been recommended that Jess get a sedated hearing test, so we will try to schedule this in conjunction with some much needed dental work. Always good to kill two birds with one stone. Jessie is having some chewing difficulty but no problems with swallowing, which was good to hear. I learned that liquid is the most difficult thing to swallow and usually the first thing to cause choking. Jess has no problem drinking her juice so we know we need to work on the chewing with her but don’t need to worry about the swallowing just yet.

Jessie’s orthopedic doctor was very pleased with the success of the new braces. She is standing up much taller when she walks and her gait has improved. Unfortunately, she is in the middle of a growth spurt and needs new braces to accommodate her larger feet. So new braces will be ready next week.

We had a new addition to the family about a month ago. A 5 month old dog rescued from a shelter in Georgia joined our busy home. His name is Rocket and he is a Jack Russell mix. He has loads of energy and loves to play with the kids, the other dogs, and anyone else that will tug on whatever he has in his mouth. Astra, our 7 yo Rat Terrier, has never been so playful. It amazes me how she seems to match Rocket’s energy whenever he wants to play. I was nervous about how she would feel about a puppy but she really adores him and is doing a wonderful job teaching him the “rules” of the house.

We are finally getting a real taste of spring this week with lots of sun and warmer temps. It is great to be outside again. Both kids will be in the summer program Pegasus. Jessie has always loved this program and I know Dylan will be so happy to be able to participate this summer. He is already disappointed on the days that he does not have school. I guess spending the day with Mommy isn’t as much fun as it used to be! They grow-up way too fast!

Hope everyone is enjoying spring! Thanks for checking in.
Cari

Friday, March 13, 2009

Friday, February 20, 2009

I have had the unfortunate pleasure of meeting (via the internet) two moms whose children were recently diagnosed with Sanfilippo. Hearing their stories brings back the feeling of raw panic that I experienced almost 4 years ago when Jessie was given the diagnosis. It is excruciatingly crushing to know that the dreams you had for your child are dashed.

Four years later, it feels as though my heart has healed a bit and the crushing feeling no longer dominates every waking moment. Life does go on and you learn to cope. Following diagnosis, I never imagined I would make it this far. I thought life would surely collapse on us. How could you go through life with this knowledge? How could it not suffocate you? I don’t have any answers but I know that Jessie has taught me to focus on the little things and treasure the moment.

I am glad that I am now in a position to offer support to mothers that are being crushed by their child’s diagnosis.

Please stop by and meet Waverly, Oliver and Julie.

http://familymctravels.blogspot.com/

http://www.caringbridge.org/visit/juliethorsrud

In Jessie’s world, things have been pretty good. She has a cold but I guess vacation week is a good week to lay low and get some extra rest. Dylan and I did a little skiing, but otherwise, things were pretty quiet. Jessie got to enjoy some sledding with her classmates a few weeks ago. With the record snowfall there’s not much choice but to get out and enjoy it! We found out our little girl enjoys some speed. She squealed as we slid down the hill together on a big, inflatable sled. Maybe she can hit the slopes with us next year. A friend has been talking to me about the adaptive skiing program at a local area. Anything we can do as a family is worth trying!

Thanks for visiting-
Cari

Thursday, January 29, 2009

This was written by a Mom with a child with Sanfilippo.

A Tale of Two Parents

Let’s pretend there are two kinds of disease. Blue disease and Red disease, both are made up in my mind to create an example and are not intended to resemble any other real-life childhood afflictions, but can resemble many different types of anomalies that afflict our kids today. I am making generalizations here with the consideration that we are talking about imaginary sick children and their parents and the establishments that deal with them. Just as everyone’s experience can be unique and personal to them, this one is my own.

Let’s pretend that Blue disease, is a childhood illness that everyone is aware of. Blue disease isn’t rare, but it’s uncommon. The child suffers relentlessly, but is able to keep about them their cognitive aspects. They can play games with their parents, draw pictures to express their feelings, and even on very good days live an almost idealist childhood experience like attending school, making friends or visiting a theme park. The blue child has a 50/50 chance of surviving this disease, so plans are made for their future in case the sun does shine upon them.

Everyone knows of at least one child affected by Blue disease and those people banded together and worked together and formed projects, foundations and coalitions to fight the Blue disease affecting the children. Because the disease is so well known, there is more money being offered for research and the research itself is promising. Many agencies know that ½ the children survive and go on to lead normal productive lives so there are always survivor stories to present and share with the affected families to give them hope.

Take this a bit father and imagine there is no actual medicine to cure Blue disease per say, but the researchers, doctors and the foundations that work with kids that have Blue disease support and recommend various remedies and therapies that might help improve the chances of recovery. As the parent of the child with Blue disease you would get right down to business and you would try anything to save your child’s life or at least enhance your quality of time together. You would exhaust yourself trying everything that was offered up in clinical trials, magazines, newspaper articles and word of mouth.

It would be hard to not know of some hospital or doctor who doesn’t oversee a patient with some form of Blue disease. The parents of the Blue diseased children can seek knowledgeable medical personnel easily, because in most cases the medical guru’s are the gatekeepers to kingdom of medical services that can lie ahead of you if you know all the right passwords. Along the way you could easily call one of many local agencies and explain your circumstances. Help would be on the way, because everyone would already know what a horrible state Blue disease could be to live with. Therapies would be offered, recreational facilities would be listed, and many other parents of Blue children could be contacted.

Now on the flip side, you thank your lucky stars that your child doesn’t have Red disease. Because Red disease is unknown clinically, most of the time there is nothing to offer the families that have Red diseased children. The disease itself is difficult to recognize and many times may go undiagnosed or misdiagnosed. The parents of course are just as desperate as the parents of the Blue diseased children but they are offered nothing, because there is nothing. Being as desperate as the Red parents, they too search, but in vain; on the internet, through shelves and shelves of medical journals and calling specialists all over the world.

Parents with children with Red disease are ready to work just as hard as Blue parents. They form coalitions, foundations and raise huge amounts of money for research. They meet families and connect over the phone or the internet and occasionally through social or personal events. It is more difficult because Red families are spread further apart due to the incidence of the disease. They feel lonely by themselves with only electronic devices to purge their feelings into. In the world of Red there tends to be more heroes lost in war than battle scars worn in victory over Red disease.

The Red parent searches through local and state agencies and culls information they think may be useful and begins to share. No one has ever heard of Red disease…the burden of proof and explanation relies then on the parent. So parents with Red children spend innumerable hours explaining the disease and copying medical records, they send booklets of information along with laundry lists of specialists and phone numbers, to anyone who will listen. Many times when asking for services or equipment for the Red child after numerous piles of proof have been submitted, the request is denied because frankly the agencies have no idea what they are dealing with.

Living solely inside a Red world, albeit comforting, is not always an acceptable means of existing for most families. They usually have outside commitments like work, possibly other children, maybe to their communities but especially to each other and to themselves. The Red parents have no choice then but to demand more of themselves and create extensions of themselves to reach out to others. Red parents are constantly choosing between the responsibility to their child and to others, fluctuating between humility, gratitude and guilt they are driven by circumstance fueled by emotion. They are forced to shed layers of themselves; letting go of relationships with friends, family, each other and even within themselves to maintain the delicate dance of obligation and longing.

Yet while the Red parents set about to live in sync between their Red world and the typically colored world their children cannot be ignored! The Red children can not be easily set in front of a TV or a video game as mommy and daddy set about to work and strategize. Most Red children can not be left alone, if even for a second. The Red child demands the attention of the most patient and positive of caregivers. No longer can a Red parent employ the services and the affordability of the 15 year old neighborhood babysitter. New demands are constantly arising as the Red child is losing touch with their world around them. Safety awareness for them is gone as well as reasoning and understanding of the family life that once was. Red children barely sleep and are plagued with seizures and episodes of screaming and crying as well as violent behavior. Many Red children do not perform on command as neither do their toileting habits. Everything within reach of the Red child is chewed or thrown, pulled or bit through; including themselves and others. There is a never ending trail of pain, destruction and debris along their path.

The Red parents wait in desperation sometimes for months for appointments for any medical doctor who has even seen a child like theirs. They travel hundreds of miles with their Red children whom are uncomfortable being confined in their outgrown car seats, only to see the famous wizards of Red disease for but a moment. When they arrive at the appointments the medical personal look at the families and their Red infected children, and shake their heads, there is pity in their eyes as they reiterate the facts that the child with Red disease will progressively degenerate in every way possible before your very eyes; losing speech and ways to communicate with you, losing sensations and feelings so they can only bite, kick, scratch and scream. Eventually the red kids lose the ability to walk, run and play along with the ability to eat, drink and swallow all while growing up in front of you. There is sympathy in their voice as they instruct the parents to go home and deal with the tragedy as best they can, for there is nothing they can do for you today. But they assure the parents and the siblings that they are doing a marvelous job along the way – they are to be commended for their efforts - keep up the good work!

But the parents plead that there has to be something! Diet, behavior modification, prophylactic antibiotics – anything! The parents promise to be good, to give up their lives if only they had something to go on…But the gurus of Red just shake their head, the reports if any are misleading…nothing has been proven scientifically. There is no research working on this as they know of. I’m sorry, there is no known remedy to stop it, reverse it or even slow it down. The Red parents are disheartened and feel like failures; they smile through the tears and thank the medical professionals for their time.

The Red parents sit in silence as they embark on their long journey home with their sick child. They are educated parents; they should be able to find something; but their inner thoughts conflict with the doctor’s spoken words that there is nothing to be done. The parents stare at their Red child asleep in the backseat. So sweet, so innocent, so beautiful…this child never even had a chance. It is such a cruel fate, how can this be happening to us they think. There is no fairy tale ending in this story they suddenly realize, it is only the very beginning of their untimely end.

Sunday, January 4, 2009

As one of my fellow transplant mothers recently wrote, the updates start to feel a bit self-indulgent at some point. Jessie’s health is good and she is very happy.

We had a wonderful Thanksgiving and Christmas. The holidays were filled with friends and family. For the first time, Dylan was old enough to enjoy participating in many of our holiday traditions. It was fun watching him begin to understand the meaning of Christmas. Many times he sang “Happy Birthday” when we lit the candles on the Advent wreath. He would begin singing it to himself and then remember that it was Jesus’ birthday and not his own.

One of the high points of the holidays was attending Worship on Christmas Eve as a family. We packed some snacks and thought we might make it about 15 minutes. Both kids enjoyed all the music and candles. Jessie was an angel and truly looked to be enjoying the experience. Dylan is a little too comfortable at church and with our pastors and made a break for the altar on a couple of occasions. We are truly blessed to have a church that accepts and embraces our family.

Everyone is back to their respective schedules tomorrow. The kids back to school and Matt back to work. It was wonderful to spend 2 full weeks together but I can’t deny that it will be nice to be able to get something done!

Happy New Year to all!
Cari

Sunday, November 9, 2008

As you can see, Jessie is missing two front teeth. Unfortunately, they didn’t fall out on their own. One of them had a cavity that we had been monitoring since transplant, and it finally needed to be pulled out. The tooth next to it also had a small cavity and would have needed to go eventually, so the dentist figured she might as well take them both at the same time. We had them pulled in the dentist’s office with Novocain instead of having Jessie put under. It was definitely the right decision for Jessie; the only problem was holding her down. She’s so strong that having me lay on top of her barely did the trick. If she gets any stronger, Matt will have to hold her down. Jessie was fine as soon as we got in the car to go home. She’s a tough kid!

Aside from Jessie’s dental work, it’s been quiet on the medical front. We know a lot of families that aren’t so fortunate. We count our blessings regularly, and we try not to take anything for granted.

Jessie and Dylan have grown closer in the past few months. Dylan has embraced the big-brother role and is very protective of Jessie. He gives her lots of hugs and kisses, and of course, she reciprocates! They sometimes even rough-house together; Dylan holds his own, but only because Jessie goes easy on him. Dylan gets Jessie to engage in a way no one else can. She loves him very much, and he makes her life better just by being his silly self.

Jessie’s walking is steadier than ever! She’s also doing better at horseback riding, sitting up straighter for longer periods of time and even doing some trotting. All the hard work that Kathie Mac (Jessie’s physical therapist) and Carleen (Jessie’s aide) have put in is bearing fruit in a big way! Being able to move around has made Jessie even happier than before-- she’s as happy as she’s been at any time in her life!

Time feels like it’s racing by. With both kids in school, I’ve been able to get things done. The leaves may actually get raked and taken to the dump BEFORE the first snow this year! I borrowed my brother’s steam cleaner and did all the rugs-- first time in 3 years! Both cars have had the oil changed and the tires rotated. These little things got put on the bottom of the list for so long, but now they’re getting done. I’m even considering painting Jessie’s play room, which has been half-painted for at least four years.

Thanks for checking in, and for your continuing prayers.
Cari

Sunday, October 5, 2008

Since my last update, we have gone to Duke for Jessie’s 3 year post-transplant studies, we celebrated Jessie’s sixth birthday, Dylan’s third birthday, and the kids started school. Things have been busy but in a good way. Both kids love school and adore their teachers. They are both at the Children’s Way, but not in the same class. It is wonderful to see them both making new friends. Dylan invited his entire class to his birthday party and the kids had a ball (see pictures). We decided to host it at a local art studio for kids called Whimsy. It was a hit with the kids and mom didn’t have to clean-up the mess! PERFECT.

Jessie’s tests at Duke all went well and everything is stable. They were not able to get an EEG this year due to side effects from the MRI sedation the day before (she slept for 22 hours and was not tired enough for the EEG), but we will schedule one here at home. As always, it was great to see everyone at Duke. They still feel like our “southern” family. We visited Durham friends and got to see Frankie and his family. Frankie was at Duke for his 3 year studies as well. It is funny that Frankie lives in CT but we see them in NC. I have a feeling we will be seeing them more now that Frankie is off isolation and able to play with kids. I am happy to say that Frankie is doing great now after all of his complications. He is such a joy—full of smiles and hugs!

The Red Sox are hosting their first playoff game tonight. Matt and I are going to cheer them on. It is one of those quintessential Boston experiences. Really, Fenway in October is Fenway at its best!

Peace,
Cari

Monday, August 11, 2008

Jessie wrapped up another awesome summer at Pegasus on Friday. This summer stands out not because of any spectacular progress (although she continues to regain skills slowly) or because of any one event but because of the wonderful friendship she developed with one of her peers. Jessie and Isabelle hit it off almost immediately. By the second week, I was hearing about how they did everything together. How Isabelle let people know when she was sure Jessie was trying to tell them that she was hungry and wanted a snack. She even remarked that she knew Jessie loved her even though Jessie couldn’t say it in so many words. And she was absolutely correct!

Every day when I would pick Jessie up she and Isabelle would be doing something together. Isabelle even liked it when Jessie would give her a rough hug that always causes pulling on the neck of your shirt or when she would do a raspberry close enough to spray her. They really were inseparable. That is why it was a little sad this year to say good-bye. Isabelle was concerned she wouldn’t get to see Jessie again because she goes to a different pre-school. Her mom and I have promised to get the girls together soon but it just won’t be the same as playing together everyday. Sounds like a typical summer camp experience.

We had a great time at Ron and Jenne’s wedding. Got to spend some quality time with the bride and groom in the days leading up to the wedding and caught up with some friends we hadn’t seen in awhile. Jessie stole the show at the reception dancing with her Dad and all the men in the wedding party. It so cute how much Jessie adores Ron and Jenne. It was so wonderful of them to include our entire family in such a happy celebration.

We are heading to Duke at the end of the week. We are combining some vacation with a few days of Jessie’s yearly testing. We are finally meeting in-person our friends the Clarke family. They have a daughter with Sanfilippo and she is a little older than Jessie. They also have an older son and a younger daughter that is almost Dylan’s age. It should be a pretty noisy crew when you get us all together! We are also meeting Frankie and his parents at Duke. Cynthia and I somehow had the foresight to plan our week together. I hope we have some time for fun stuff in between the kids’ tests.

Summer has really flown by so far. I hope you all enjoy the last few weeks before the fall rolls in.

Cari

Tuesday, June 24, 2008

Today is Jessie’s third anniversary of her transplant. It is pretty unbelievable to think about all she has been through in these 3 years. She is still so happy and really doing better than ever.

Jessie’s summer program (Pegasus) starts on Monday. She had such a good time last year and I can only imagine it will be the same this year. It was at Pegasus last summer that her walking really improved. Now, she has had surgery and relearned how to walk and is cruising around causing lots of trouble. She has really come a long way in a year.

Life is pretty busy in our household. The summer is filling up with lots of fun activities. Matt and I have been to some Red Sox games. I almost feel like a regular again. The family will be making a couple of trips, including a flight to Kansas City for Ron and Jenne's wedding. Wow, 2 flights in 1 year—that doubles the number of times the kids have flown! I know Ron is looking forward to dancing with Jessie on his wedding day (and with his new bride, of course).

As things get busier, we try to remember to slow down and enjoy things together. It is so easy to get caught up in the constant schedule of activities. We are so blessed for Jessie’s continued good health and happiness and we try to take time to just be thankful.

Thursday, May 15, 2008

Today is International MPS Awareness Day. I wish I could say that I did my share to raise awareness and promote research for a cure for this awful disease, but I’m not there yet. I have to give credit to my two MPS Mom friends, both Jennifers, Moms to Ben and Mackenzie. Both do an amazing job raising their families and raising awareness of MPS.

I have to share a cute story. A few days a week, weather permitting, Jessie’s class comes out to the playground to be released to the parents at the end of the day. On these days, Dylan and I arrive a few minutes early so that Dylan has time to play before Jessie is ready to leave. A few days ago, we were waiting for Jessie’s class on the playground and another class came out to play. A little girl that I had never met came over to me and asked if I was Jessie’s Mom. She looked like she had been waiting to meet me because she had something very important to tell me. She questioned if I was aware that Jessie cried almost every day while at school. I am aware that Jessie sometimes seems like she is crying but really she is just complaining about one thing or another and that she is not in any distress, but I wanted to make sure this little girl was no longer concerned for Jessie’s well-being. She then told me that she was sure Jessie was crying because they (the teachers) made Jessie wear those things on her legs (her AFOs). It really made me laugh at the time but it also warmed my heart that this little girl cared about Jessie and wanted me to know what was being done to her in my absence.

Jessie will be returning to the Children’s Way next year. We are very happy that she will have an extra year at this nurturing pre-school. These are a special bunch of educators. This is the last paragraph of Jessie’s recent annual report:

“Jessica has had a wonderful year in the Panda class. She has made so much progress and has been an influence on her classmates giving them skills that can’t be taught by teachers but only learned when you share a classroom with children of differing abilities. Thank you for sharing Jessica with us this year, we loved every minute of it.”

Saturday, March 22, 2008

Cari changed the pictures on the photo page, to share more photos from our Disney trip in January. Not a day goes by that we don’t fondly remember that trip. Jessie literally had the time of her life!

A few friends have chided me for not updating this page recently. Sorry about that. Our computer has been in the shop for most of the past month. This was hard for Cari, as the Internet is her primary connection to the outside world during the week. We don’t realize how dependent we are on technology until it is unexpectedly taken away!

Jessie is making good progress at school. She does things more purposely than she has for a long time. Her teachers and therapists are thrilled! At home, unfortunately, Jessie rarely uses her new powers for good. More often, she does things she knows she’s not supposed to do, then laughs at us when we attempt to scold her. We do our best to embrace this as the progress it is, but it’s not always easy. It’s even harder for Dylan-- he has begun to play with his toys in more involved and imaginative ways, and it’s frustrating for him when Jessie decides to wreak havoc with his stuff. To picture the scene, imagine that Dylan is setting up Tokyo, so Jessie can play Godzilla. Dylan takes this a lot better than you’d expect for a two-year old. That doesn’t mean he’s happy about it, but he never forgets that he loves his big sister. (The feeling is more than mutual.)

Jessie’s walking is better than ever! This is the result of lots of hard work at school by her physical therapist (Kathie Mac) and her one-on-one aide (Carlene). To give her more room to practice walking at home, we’ve made most of the first floor of our house Jessie-proof.

Dylan likes music. Our friend Ted gave us a keyboard (a real one, not a toy), which is one of Dylan’s favorite things. Dylan also likes my guitar. I let him strum the strings while I hold it. He thinks I’m his personal minstrel. He’ll demand that I play guitar for him. Then, after he’s watched me play for a couple minutes and strummed the strings a few times, he’ll ignore me and play with his toys, but he gets very upset if I stop playing or (heaven forbid) put the guitar away.

We recently marked the third anniversary of Jessie’s diagnosis. This anniversary has been harder than the past two-- partly because Jessie’s stable health affords us the luxury (if you can call it that) of reflecting on the past, and partly because Dylan is the same age now as Jessie was then. I vividly recall the despair I felt in the weeks after Jessie’s diagnosis, as well as the hope I felt when Cari first talked to Doctor Kurtzburg (head of the transplant program at Duke) just before Easter. That began the long journey of transplant, and although that journey never will be fully behind us, we now see that journey as only a part of the larger journey of raising a child with Sanfilippo. In those early days, we were told that children with Jessie’s particular variety of Sanfilippo (Type A) typically lived about ten years, with a poor quality of life in the latter part of that short span. Transplant held out the hope of something better than that; today, some of those hopes continue, even as our most optimistic hopes (i.e., preservation of Jessie’s cognitive abilities) have been extinguished. The thought of Jessie’s life being half-over is devastating, but even worse is the fear that we may accept her death, whenever it comes, as a blessing of sorts. It’s hard to fathom seeing your child suffer like that, even after seeing friends go through it with their children-- not to mention seeing Jessie endure more than a lifetime’s worth of suffering during the transplant process. I don’t know how to conclude this paragraph properly, except to say that we need, and deeply appreciate, your continuing prayers.

Frankie has been hospitalized three times since our last update. Doctor Paul is involved in Frankie’s care again. For Jessie, reconnecting with Duke was a turning point, but Frankie hasn’t turned the corner yet. He and his family need your prayers, even more than we do.

Happy Easter.

Thursday, January 24, 2008

It has been an eventful month.

We got back a week ago from Disney World. It was Jessie’s Make-A-Wish Trip, and she had the time of her life!! Cari posted new photos.

I can’t put into words how everyone made us feel. We took Jessie to six theme parks in five days (Universal, Sea World, Magic Kingdom, Animal Kingdom, Epcot, MGM). The people at the parks were wonderful to us!! We could cut lines for every ride, show, and character photo-op.

For Cari and me, watching Jessie meet the characters was the best part of the trip. Words and pictures can’t adequately express what it’s like to see Jessie so happy, so excited and so engaged! She was affectionate, too-- Mickey Mouse got kisses and hugs on several occasions. Jessie even said “dog-dog-dog” as she hugged Pluto; she hadn’t said that in almost two years, and I didn’t think I’d hear her say that word again.

I could go on and on (and I will for a while). Meeting Barney at Universal Studios was a highlight. We got front-row seats, and they invited Jessie to stay and have her photo taken with Barney after the show. (They don’t accommodate photos for everyone, like they do at the Disney parks.) We also got our photo taken with the Simpsons, which was a highlight for me personally. Jessie also met Minnie Mouse (not in Mickey’s league, at least in Jessie’s mind), Goofy, Chip and Dale.

Besides meeting characters, Jessie got to pet a dolphin at Sea World. One of the trainers basically saw us, then made it happen. Dylan was afraid of the dolphins’ teeth, so after Jessie got to pet one, she took us to the underwater viewing area, where she tapped on the glass and blew her ultra-high pitched whistle (you can’t hear it) to get a couple dolphins to visit us along the glass, where Dylan wasn’t scared. Like I said, you’re treated like a superstar. Actually, Jessie was the star; the rest of us were the entourage.

Speaking of the entourage, we spent three days with Sara and Dan, who by coincidence had planned to be in Disney World the same week as us. It was great to see them! And those of you who know how much Jessie loves her people can imagine how happy she was to have two of her best friends in the world along for the fun!! We also had dinner with our friend Lindsay and her four-month old son, Jack. Dylan had never spent such an extended time with a baby before, and he loved it! That might have been the high point of Dylan’s trip. Either that, or playing in the waterfall outside the Barney show. (What a mess!)

We stayed at Give Kids The World, which is a resort for kids who come to Disney through Make-A-Wish and similar charities. GKTW is a small amusement park in itself. They have paid employees, but most of our contact was with their many volunteers, who are a varied, incredibly special group of people. If our trip had been a day longer, I think we’d have spent the extra time at GKTW. It’s an amazingly uplifting place. We hope to return to Disney while Jessie is still healthy and happy, but it makes me a little sad that we won’t get to stay at GKTW again. It’s a once-in-a-lifetime experience.

While we were at GKTW, we met Bailey, a 9-year old with Sanfilippo. She’s the youngest of five children. They’re a beautiful family. Watching the love Bailey’s four older siblings have for her touched our hearts. They also cracked us up—the story of Bailey going with her family on the Tower of Terror ride at MGM is the funniest thing I have heard in a long time!

Our friend Frankie and his parents need your prayers. He has been hospitalized three times in the past two weeks, most recently in the PICU. After watching Frankie and Dylan run around a month ago, this is devastating news. Oh God, please let him be OK.

Thanks for checking in, and for your continuing prayers.

Thursday, December 27, 2007

A belated Merry Christmas to all Jessie’s friends!

Thanks to everyone who helped make our Christmas so wonderful! Rob and Heather were here during the day on Christmas Eve. My parents came that night for dinner and were also here Christmas morning. We had Christmas dinner in Connecticut with my aunt, uncle and cousins (the Murphys), then we were back in Connecticut yesterday to visit old friends.

Jessie loved every minute of the three-day celebration. She has grown accustomed to Dylan hogging the spotlight, but this Christmas, Jessie was the star of the show (except when we were opening presents, which doesn’t interest her). She threw herself into every holiday feast with reckless abandon. She melted hearts with smiles of recognition for buddies she hadn’t seen since last Christmas. And she showed off her walking, which is getting a little steadier each day. Several people who hadn’t seen Jessie in a long time were amazed how alert she is! It was good for Cari and me to hear this—her progress can appear painstakingly slow to us, but the progress she’s made since this time last year is nothing short of miraculous! We’re forever grateful to the teachers and therapists whose dedication has made this possible.

While we were in Connecticut yesterday, we stopped to see our friend Frankie from Duke (and his parents too). Frankie has Sanfilippo and was diagnosed one week after Jessie. Frankie has continuing transplant-related health challenges, but he looked great yesterday! He’s obviously a happy kid. Frankie and Dylan hit it off right away; we’ll have to get them back together soon.

It has been almost three years since Jessie’s diagnosis. Sometimes, it seems like just yesterday we were dreaming big dreams about Jessie’s future; other times, it’s hard to remember what life was like before we’d heard of MPS. It’s easy to focus on the negative (and sometimes I do), but the fact that so many of you will take the time to read this post and say a prayer for Jessie means more to us than you’ll ever know. May God bless each of you in 2008.

Sunday, December 2, 2007

**New Pics Updated 12/18


We had a great Thanksgiving! We spent the holiday with our friends Sara and Dan. As always, they treated us like family and made Jessie and Dylan feel like the most special kids in the world. Thanks guys!!

In the past week, Jessie has made great progress walking. After weeks of hesitating to put weight on her feet, she now will take several steps without assistance, and will walk even farther if you hold one of her hands. This summer, she plateaued at this point for a while before she started walking on her own, so we’re staying patient. For the first time since her surgery, though, we’re confident she’ll be walking on her own (relatively) soon. Her teachers and therapists at school deserve all the credit in the world for Jessie’s progress. In particular, her physical therapist (Kathie Mac) has gone far beyond the call of duty. Of course, every child with disabilities should have so many people dedicated to helping them reach their potential, but sadly, that’s not the case. We know we’re blessed.

We decorated for Christmas early, as usual. Jessie used to love Christmas decorations—especially the tree—so it’s sad that she doesn’t really notice them anymore. On the bright side, this will be the first year that Dylan “gets” Christmas. He doesn’t understand that Santa is coming, but he likes the decorations, and he definitely knows what a present is! Jessie will just be happy to have friends and family around—which, of course, is much closer to the heart of the season than presents, lights, and so on. Once again, instead of me teaching her about life, it’s the other way around.

Two years ago, when Jessie was recovering from transplant, I discovered a website (buynothingchristmas.org) run by Canadian Mennonites, urging people to shun commercialism at Christmas time. It really spoke to us—at least partly because we couldn’t afford to do much for Christmas that year. Even if our motives weren’t noble, however, celebrating Christmas more simply brought us closer to the true meaning of the season. We’re making a concerted effort to keep things simple, even though money isn’t as tight now as it was then. Don’t get me wrong—Santa will be good to the kids, and Cari and I will get something for each other too. But I refuse to tear my hair out making sure I get the perfect gift for everyone on my list—not least because I’d hate to have anyone I love get stressed out on account of my Christmas gift.

Thanks for checking in.

Monday, November 12, 2007 1:56 PM CST

Jessie got her casts off a few weeks ago. She is slowly adjusting to the new feeling of standing with her heels on the ground. Her physical therapist is working with her on a daily basis and is pleased with her progress. We are a bit more impatient and would like to see her walking independently, but Jessie tends to do things on her own schedule. It has been fun shoe shopping for her for the first time. She wears a double-wide so we have been all over creation to find a sneaker that will fit her WIDE feet. She has been quite a trooper.

Jessie has been experiencing some symptoms of generalized anxiety and some sleep disturbances over the last couple months. After consulting with our doctors in NC and all of her therapists at school, we have decided to try a medication to see if we can alleviate the problem before it gets any worse. I am so glad we have a team that is willing to think outside the box. When dealing with these rare diseases, traditional approaches don’t always do the trick. So far so good, so we are keeping our fingers crossed.

Dylan is doing well. This age is so fun. He is very good at getting into everything, which is just what a 2 year old should be doing. His new favorite thing is to get the step-stool out and wash his hands in the kitchen sink. As cold and flu season approaches, how can I deny him this request? He must ask to wash his hands no less than 100 times a day. A little germaphobe in the making!

Matt and I went to a party the other evening and our very cool babysitter came to watch the kids. She is a junior in high school and carries the cutest, trendy handbag. As soon as she comes in the door, Dylan has her handbag on his shoulder walking up and down the kitchen like it is the runway in a Paris fashion show. I guess it could have been a European carry-all! He is quite a hoot.

Hope everyone has a great Thanksgiving!

Cari

P.S. I will post some new photos soon!

Thursday, November 1, 2007

I have started this post several times. Each time, it has ended up in the computer trash (I know, not as dramatic as crumpling and throwing in the actual trash). There are several things on my mind. For one, the Red Sox won the World Series and Matt and I were a couple of lucky fans that were able to attend some of those momentous games. In a city where people seldom even look at people they do not know (never mind say “hello”), the Red Sox have a way of bringing us together in a unifying way. I truly love the Red Sox for this and I believe they deserve our loyalty.

During all of this excitement and celebration, dear friends of ours were saying good-bye to their oldest daughter. Caroline and Kate both suffer from a disease very similar to Sanfilippo. Kate, the younger of the two, was the very first child ever transplanted for their diagnosis. Unfortunately, the disease in her older sister, Caroline, had progressed too far for her to be a candidate for transplant. Alison, their mother, spent several months at Duke with Kate while she was recovering from transplant and I know how difficult it was for her to be away from Caroline during this period. She has been a beacon of commitment and dedication as a parent in a world where you must juggle the needs of all of your precious children.

The truth is, none of us as mothers, want to face the truth. We are life-givers--magical healers whose very kiss can take away the pain. When the dark truth is no longer able to be ignored and we must face the fact that there are some pains that we are not able to magically heal, it can be overwhelming. Alison has always been my rock when it comes to this. I have a feeling she is to many other mothers she has met along the way. In a recent post, one of Alison’s sisters wrote of how Alison was present with Caroline in her calm, very calm way. I imagine Alison will never stop nurturing Caroline. Only now it will be her memory that she will be nurturing.

Peace,
Cari

Sunday, October 7, 2007

We’re counting the days until Jessie gets her casts off.—10 to go. The casts have taken a beating; you wouldn’t believe she’s only had them for 5 weeks. She’s been a trooper, but I think she’s reaching the end of her rope. We’ll be glad when they are off and she can finally touch her heel to the floor when she walks!

Things have been busy. Our Make A Wish coordinators came to the house last week to meet Jessie and to talk about her wish. Obviously, Jessie can’t tell us what she wants, so we’ve been brainstorming, trying to make the perfect wish for her. We’re leaning toward a trip—she loves to go on vacation as a family! The details haven’t been worked out, but it’s exciting to think about getting away for a while! I’m sure Jessie will enjoy being together no matter where we go.

Dylan turned 2 this past week. It’s hard to believe it was 2 years ago that Jessie was about 100 days post-transplant and I went in to have Dylan. Three of the four of us have been inpatient at Duke. That’s kinda crazy. Maybe one day Matt can have something treated at Duke just to round out the numbers. We had a couple small parties for Dylan and he enjoyed all the presents (thank you!). We got him a train table with the tracks glued to the table, and except for sleep, he has barely taken a break—just a few minutes to gulp down some food. It’s adorable!

Robert, Heather and I attended a benefit concert to raise money for Ben’s Dream, a charity our friends started when their son was diagnosed with Sanfilippo. Over the past 6 years, they’ve raised over $600,000 for research. Five families of Sanfilippo children were at the fundraiser, and there were poster-sized pictures of the kids along one wall. I’m sure it personalized the cause for concertgoers who don’t know Jessie, Ben or the other kids. It was a terrific event, and we’re honored that Ben’s family chose to include us. Unfortunately, it’s a constant struggle to get funds for researching “orphan diseases” like Sanfilippo. Ben’s Dream is standing in the gap, but so much more needs to be done. I hope one day that we’re able to help.

Matt and I went to the Red Sox game on Friday night. It was a LONG game but well worth it to see Manny’s homerun in the 9th inning. Now we head into the Championship series against either the Yankees or Indians. Either way, it will be interesting!

Thanks for checking in. Go Sox!
Cari

Friday, September 28, 2007

Our little friend, Noelle, lost her battle with cancer yesterday. She was 3 years old and had spent most of her life waging a war against the deadly disease. If there was ever a fighter, this little girl and her family were the best of the best. I truly hope she is in heaven enjoying the things that she was denied here on Earth. Like her father has written, may she be running and enjoying her very long, beautiful hair.

I know life has to go on for all of us. The groceries need to be picked up, the laundry done and the bills paid. But, I feel like things should stop for a moment. We need to remember Noelle’s life, her family’s loss, and the sad truth that there are hundreds of families struggling today. I know we all have our struggles. Certainly, we have ours. But, today, it is not about us.

Peace,
Cari

Friday, September 14, 2007

Jessie is recovering well. She went back to school on Monday. They have been working with her to get back up and walking in the casts. Unfortunately, Jessie's “walking” casts are big and clumsy. Jessie is hesitant to put weight on them, let alone walk!

On Tuesday, Jessie had her first therapeutic horseback riding lesson at LoveLane (I posted pictures). Jessie loved it, and her instructors felt she was a natural. It almost brought a tear to my eye to see her up on the horse enjoying the experience. Her physical therapist thinks this therapy will definitely help with her trunk strength and could even help with her walking skills. The instructors and volunteers do a wonderful job making each child feel very special.

It’s a big weekend here—the Yankees are in town! Hope you're having a good weekend too. Thanks for your prayers.

Friday, September 7, 2007

Jessie's surgery was successful. She came home this morning and is resting comfortably. She got her last morphine dose yesterday afternoon; since then, she has only taken Tylenol. I can't even describe how tough she is.

Thanks to Ingrid for watching Dylan yesterday-- he had a great time!

Thursday, September 6, 2007

Jessie is having surgery today to lengthen her Achilles tendons. We hope this will improve her mobility. Please pray that the surgery is a success. We'll post again when Jessie is home from the hospital (probably tomorrow).

Matt

Wednesday, August 29, 2007

Jessie had a very nice birthday yesterday. Thank you for all the birthday wishes! I think Alison is right, we will try and stretch this celebration out a bit to include bringing cupcakes to her new class when school starts—I have only been waiting to do this since the day I found out I was pregnant!

We spent last week at Duke for Jessie’s 2-year studies. I should start by saying that Jessie started walking independently (completely ditched the walker) a couple weeks before the trip. This amazed everyone and set the tone for the week. We began with the dreaded EEG. For best results, she needs to fall asleep for part of the test, but she can’t be too sedated—the only sedative they will use (chloral hydrate) doesn’t seem to affect Jessie, so we tried sleep deprivation. The only problem with that is one of us has to be sleep deprived along with her! Matt jumped on the bomb and got up with Jessie at 4:30am on Monday morning. They went out for coffee and did some grocery shopping all before 9am. I took her to the EEG and she followed the program to a T, allowing them to get the BAER (auditory test) and sleeping EEG without a hassle. After several abnormal EEGs in the last year and a half, her results were completely NORMAL again. Dr. Paul was pleased as punch (to steal a quaint phrase from our former governor).

Tuesday was the grueling day of developmental tests. Again, her walking pretty much knocked their socks off on its own. She sat at the little table and jumped through hoops for far longer than any of us anticipated. At one point I told the tester that she could not perform a matching test they wanted to try, and Jessie proved me wrong 3 times over. I think I sometimes underestimate her. You’d think I would learn. She gained at least 3 months in every area except expressive language (she hasn’t regained any words). We owe a debt of gratitude to all her teachers and therapists at Children’s Way. Their dedication is obviously paying off!

The MRI of her brain was stable (no further atrophy) and the pocket of fluid that had developed post-transplant has completely resolved. This may explain the normal EEG, but Dr. Paul hopes the transplant is starting to improve her brain function by reducing the amount of storage. I like to think he is right.

Her cellular immune profile is, in a word, “spectacular” (Dr. Paul’s description). She has responded to the first set of immunizations and we will continue with the 2nd round early next month.

We were able to see visit old friends and had a festive dinner with Kirsten and Mo. Unfortunately, the end of August is not the best time to visit, and we missed some friends that were on vacation up north for the week. I want to thank our friend Mary Ellen for flying down to meet us in 100 degree temps to help with the kids for the week. It is unbelievable how much an extra set of hands helps during that week of testing! Dylan will be forever grateful for not having to sit in any boring meetings with doctors or in any waiting rooms.

The only cloud on the week were some concerns about Dylan’s development. We are trying to get to the bottom of a possible hearing loss and coordinating some special therapies for him here at home. I’m hopeful that he will be fine but it did put a little damper on the celebration.

If there is one thing I have learned from all of this, is that you cannot take one minute for granted. Not one hug, kiss, special story or belly laugh. You must treasure every moment like it is the only thing that matters, because in comparison, does anything else really matter? I think not.

Enjoy the last weekend of summer! Thanks for checking in.
~Cari

Tuesday, August 28, 2007 6:12 AM CDT

Happy Birthday Jessie!!

I can't believe my baby is 5 years old today!

Sorry for the lack of updates. We are home from Duke and I will update soon about the amazing results for our little girl.

Hope everyone is doing well!

Cari

Wednesday, August 8, 2007

Sometimes the world does not make any sense. We have mentioned our friend Noelle before. How she was determined to win the battle over leukemia with a second transplant in April right after her third birthday. She was almost to 100 days post-transplant for a second time when the cancer came back. Her parents just found out that she has relapsed.

They have very few options left but they are choosing to live life to the fullest for her remaining days. They are an amazing family with an amazing little girl. On her third birthday, her mother shared with all of us Noelle's favorite joke. It went something like "Waiter, what is this fly doing in my soup?" Waiter: "it looks like the backstroke!" I think I will always remember this story. Tonya, thanks so much for sharing Noelle and her sense of humor with the world!

Friday, July 13, 2007

Jessie was re-immunized today. They were able to combine a couple shots so the final tally was only 4, two in each thigh. She didn’t even cry! She fussed a little but was one tough cookie. I feel like this was the final chapter in the story of transplant. Realistically, the story never really ends but today was a big milestone.

Summer camp, or Pegasus as it is called, is at its half-way point. It is hard to believe 3 weeks have passed. During the first half Jessie has splashed in the pool, started to learn to walk up stairs (with assistance), learned the merengue in dance, baked a cake, painted a happy sun for the kitchen, had 2 pizza parties and met so many wonderful kids and adults. As much as she loved Children’s Way last year, Pegasus has topped it! She comes home every day completely exhausted and wakes every morning excited to return. I wish Pegasus lasted longer than 6 weeks!

There isn’t much to report on the medical front. Jessie’s ear tubes are both falling out. We’re not sure what we are going to do about that, if anything. She has a small cavity in one of her front teeth. We are treating it with a daily fluoride paste (which Mommy forgets more often than she remembers). Not sure what we are going to do about that. We will see the orthopedic surgeon next week to discuss possible treatments to improve Jessie’s mobility. And in about a month, we will return to Duke for a week for Jessie’s 2 year check-up.

Our summer is flying by. Every weekend seems packed with activities. Matt and I are getting a little spoiled both by the wonderful performance of our favorite team and by the number of times we have made it to Fenway to watch them play.

Our little friend Frankie has had quite a time the first half of the summer. He was in the PICU with pancreatitis but is now home and doing much better. He and Jessie were neighbors on 5200 during transplant. He and his parents have been incredibly strong through all of the bumps in his recovery. We are all praying that the rest of the summer brings him health and healing.

I hope everyone is enjoying the summer and is able to find some time to relax and enjoy their loved ones.

~Cari

Monday, June 25, 2007 (day 731)

** new pics updated July 1

Yesterday was the 2nd anniversary of Jessie’s transplant. It seems hard to believe that just 2 years ago we were sitting on the 5200 unit at Duke celebrating the hope that the new cells brought to our family. Jessie’s been through a lot since then (well, we all have). Jessie is doing well and we are hopeful that the new cells will enable her happiness to continue for several more years.

Today was Jessie’s first day of her summer program. It was the first time I have ever had to pack her a lunch. Of course, I overdid it and she returned home with half the lunch still in her lunchbox. Thanks again to our friends Ingrid and Hannah for the awesome, custom decorated, insulated lunchbox!

Jessie had a week off before summer school began. We used the time to visit several friends—Sara and Dan, Karen and Barry, Tait and Claudia. Thanks to all of you for your hospitality! Jessie loves to see old buddies; she has an amazing memory for people she loves, even when she hasn’t seen them for a long time.

Our friend Noelle was released from 5200 last week. She faces a long and uncertain journey. We can’t imagine what it’s like to go through transplant twice. Please pray for Noelle and her family.

Thanks for checking in. We hope everyone is having a great summer!

Peace,
Cari and Matt

Wednesday, June 13, 2007

Tomorrow is Jessie’s last day of school. She had a wonderful year in the Bunny Room. We will miss all her teachers.

Her summer program starts the week after next and some of the people will be the same but there will be one big difference: she will have a new aide. Nicole, who has become Jessie’s BFF, has family obligations that will prevent her from being Jessie’s aide this summer and next year. Poor Nicole has become very attached to Jessie and has almost been in tears every day at pick-up for a week now. We will stay in touch but she will miss the frequent contact. Jessie adores Nicole and showers her with hugs and wet kisses. There is always a smile for Nicole. We will miss her!

On Friday, we are leaving for a long weekend to visit friends in the Philly area. Next week will be Matt’s first full week off of work that did not involve a trip to Duke in over 2 years. OUCH! To say that we are looking forward to the week, would be a gross understatement. It will be nice to visit with friends we haven’t seen in a long time and enjoy some time away from home.

Jessie and Dylan are getting along better than most siblings their age (certainly better than my brother and I did at a young age). Dylan shares well with his sister and often offers her his pacifier if she seems to be admiring it. Whenever Jessie hears the tray being removed from Dylan’s highchair, she makes her way to the kitchen to see if she can get some scraps. Dylan will share a cracker with her and if there isn’t an extra to spare, he will find a little crumb and put it into her mouth like a mother feeding a baby bird. It is so sweet. I think I will be hard-pressed to be prouder of him than I am today.

Three weeks ago Jessie went in for her quarterly check-up. We didn’t expect any problems because she had not been sick recently. Her ANC (which measures the body’s ability to fight off infection) was very low for her stage of recovery (it was 1031). It was borderline neutropenic, which means she was vulnerable to infection. Everyone assured us that she was probably just fighting off a current virus but the low number gave us a bit of a scare. Yesterday we had a recheck and it was back up to 3000. I never knew that even a “normal” child can be neutropenic when they are battling a virus. I guess it is good to know. Of course, being a transplant child puts a different spin on everything and I don’t think I will ever fully stop worrying, but I get closer with every successful little battle!

Thanks for checking in.

Cari

Sunday, May 20, 2007

*NEW PICS added Wed.*

Jessie is cruising along. She had a routine neurological appointment. She also had her first dental cleaning—she was surprisingly cooperative!

Jessie is still doing great at school. We got her annual “report card” this week. It’s nice to reflect on the progress she has made over the past several months. She is more alert, more mobile and more responsive, and she has even made a few friends! Nicole (Jessie’s aide) told Cari that Jessie responds when the other kids say her name, even though she doesn’t respond to her teachers (or to Cari and me).

With Jessie doing so well, Cari and I get out a little more often. We went to a Red Sox game last week. Thanks to Uncle Rob and Aunt Heather for watching the kids! Last night, we went out for dinner to celebrate our anniversary (7 years ago today!). Unfortunately, with all the college graduations this weekend, we had to settle for the all-you-can-eat sushi buffet. Not the most romantic venue ever, but the food is terrific—and none of you will be surprised to hear that I got my money’s worth.

It has been a tough week for our friends the Bennetts. Their daughter Ciara (11-year old with Sanfilippo) is in the hospital with a life-threatening case of pneumonia. Please remember them in your prayers.

Thanks for your continuing support.

Matt

Tuesday, May 15, 2007

I hope all my friends that are mothers had a good Mother’s Day. Mother’s Day was always difficult for me. I lost my mother when I was only 10 years old. I missed her at all my graduations, my wedding, the births of my two children, and especially through Jessie’s diagnosis and transplant. But, one solace I have had through all the scary times with Jessie is that my Mom was watching Jessie from above. I truly have taken comfort in knowing that my Mom would be waiting for Jessie if it was ever to be her time. This may seem like a morbid thought to some, but these things cross your mind when your child has a fever of 106 degrees or the child down the hall dies suddenly. My heart goes out to all those mothers that have had these thoughts cross their mind.

I had a wonderful Mother’s Day this year. Waking up with my 2 kids and going to church on Sunday morning is the most “normal” thing and it is WONDERFUL!

Friday, April 20, 2007

Jessie has been in an exceptionally good mood since we returned from our Easter trip. I think it was good for both the kids to get away. They both got a lot of attention from our close friends in western NY. Thank you Osborne clan for always making us feel like family!

This week was spring break from school. We started off the week without power on Monday. At 3pm, with no return in sight, I called my brother and asked him if we could come over for the afternoon. Even without any power, Jessie was in pretty good spirits. The rest of the week was wet but at least we had power! We finished the week with some spring weather today. We spent a couple of hours at the park this morning and all three of us got some much-needed sun.

Jessie is benefiting from her recent Botox injections. We hope some improvements will continue once the Botox wears off. She is doing a great job walking with her walker and even takes a few steps on her own. With this new independence have come improvements in other areas. Her therapists at school are excited to tell me about the “new” skills that are beginning to emerge. After telling them that it is typical for children with Sanfilippo Syndrome to decline slowly but steadily, they are very encouraged by her recent progress. I believe that she is starting to recover some of the skills she lost during transplant. She seems to be more aware of the world around her. I really think the walking has helped tremendously and we will continue to entertain other interventions that may assist her independent walking.

Matt and I are going to our first Red Sox game of the season tomorrow. It is the Yankees’ first trip of the season to Fenway. The fact that we will be in attendance is one more sign of “normalcy.” Another sure sign is our replacement of the industrial strength “doctor ready for the OR” soap with a floral pump from Bath and Body Works. Hopefully it will be more gentle on our skin. It definitely smells better!

As we head into the weekend, we are thinking of our friend Noelle who was admitted to Duke today for her 2nd transplant. May this treatment be a success and send her cancer into remission for good.

Peace, Cari

Friday, April 13, 2007

New Easter pictures. Will update more later. Needless to say, we had a great trip and happy Easter!

Hope everyone has a good Friday the 13th!

Saturday, March 31, 2007

I changed the photos on the picture page.

Spring has arrived (for now), and we’re enjoying it. This morning, we went to the town Easter egg hunt but decided just to observe, for fear of being trampled when the whistle blew! We saw some of Jessie’s classmates and they waved to us from the starting line. I hope they got lots of eggs!

We spent the rest of the day shopping and sightseeing in Salem. We lost track of time and finally stopped for lunch in a pub. Jessie was vocalizing her displeasure with our delay in getting something to eat and a tourist at the next table offered Jessie one of her fries. Jessie gave her a very grateful response and they immediately became friends. Jessie devoured her new friend’s fries and her own—we had to order another plate so that Dylan could try them out!

We’re looking forward to spending Easter with friends in western NY. It will be the closest we’ve come since transplant to having a real vacation! (Trips to Durham for Jessie’s follow-up care definitely do NOT count.) Things are returning to normal.

We’re thinking about our friend Noelle and her family as they prepare for a second transplant to battle the cancer that has returned. As hard as it is to prepare for the first transplant, I can only imagine the difficulty in preparing for a second. Please pray that Noelle and her family find the strength they need to continue the fight.

A friend commented that we take our children’s health for granted until it is too late. We certainly were guilty of that before Jessie’s diagnosis. With so many friends still struggling, we know how blessed we are.

Peace,
Cari

Sunday, March 11, 2007

It has been 2 years since Jessie was diagnosed with Sanfilippo Syndrome. I wish I could say not much has changed, but unfortunately that is not the case. I know from talking to other moms with children with Sanfilippo that looking back is never easy. It is better to stay focused on the moment and enjoy what you have today. I am improving but on anniversaries and birthdays, it can be really hard not to think back and reflect on how much Jessie has lost.

At the same time, I am very grateful for how much we still have. Jessie survived a transplant and has not lost any skills in 6 months. She is happy and able to enjoy some “normal” activities. School happens to be among her favorites.

Jessie recently missed a few days of school due to a nasty case of conjunctivitis she contracted from her brother and I want to share the message I received from one of her therapists. She wrote “We have missed Jessie this week. She has such a presence and because we are 'neighbors' with the bunnies, Janet and I often hear her and her enthusiasm during the mornings. We all really enjoy her so much.”

We are so lucky to have such a wonderful group of people committed to working with Jessie. I am often in awe of their patience and creativity. Jessie’s assistant, in conjunction with the inclusion coordinator, decided that Jessie may benefit from “music therapy.” I was a bit skeptical because I know Jessie has had a difficult time in the past keeping headphones on her ears. Boy, was I wrong! Jessie loves it! They got her an MP3 player and programmed it with some children’s songs and some classical music that has been shown to improve brain activity. It turns out she really prefers the classical music. She listens for about 15 minutes everyday while looking at a picture book. Her assistant has found that she is able to sit longer and better focus on the book when she is listening to her music. Wow!

We have been transitioning Jessie’s care back to her pediatrician. Dana Farber served us well, but it is so nice to see Dr. Mandell when Jessie needs to go to the doctor! She will be getting her second series of Botox injections in her calves this week. The first shots helped a bit but now she has new nighttime braces that give her a light stretch all night, so hopefully we will see lasting results. We are excited for the spring to come so Jessie can practice walking with her walker outside. It is so good for her independence.

We are realizing that Dylan watches WAY too much television. Jessie loves her shows, and although we have cut down on the amount she watches, it still is a big chunk of her time. We thought (or deluded ourselves into believing) that Dylan didn’t really watch the TV and just played as he would if the TV were off, with an occasional glance at the TV if a song was playing. Our delusions have been crushed by his new ability to do EVERY hand motion associated with EVERY song in EVERY show! He also likes the intro to the Colbert Report-- there's an eagle in it, and for some reason he's fascinated! Yes, it is adorable now, but I have a feeling we will be paying for this later!

Matt's parents bought us a new camera for my birthday, so we've been snapping lots of photos of the kids! I put a few of the better ones on the photo page.

Thanks for checking in on us. Please continue to pray for our friends, Frankie, Bryce, Noelle, and I would ask you to add another little boy that was just diagnosed with Sanfilippo. His name is Jared and he is 2 years old. He and his parents live in the Boston area and I hope that Matt and I will be able to provide some moral support through this difficult time.

Peace, Cari

Wednesday, February 14, 2007

HAPPY VALENTINE'S DAY!

We have had a busy week so far! Matt celebrated his 33rd birthday yesterday. What a young'un! Today, we had the first snow-day of the winter! It was more sleet than snow but still school was cancelled. We live in one of those towns that prides itself on never cancelling school, so it was a big deal! Jessie was a bit bored at home all day but it was better than dealing with the horrible conditions on the road.

We are constantly reminded of our blessings. Please keep our Duke friends in your prayers. Noelle and her family are preparing for a 2nd transplant to combat her cancer. Bryce is out of PICU but still has a long road to recovery. Frankie is still battling GvHD and infection and needs the cold/flu season to be a short one! These are all dear friends that need your healing prayers.

I hope everyone has a wonderful day with their loved ones!

Cari

Saturday, February 3, 2007

Well, I turned 35 yesterday (thanks for all the happy birthday wishes). Ugh! We had a wonderful teenager from down the street babysit for the kids so we could meet some friends for beers. We went to an old favorite, Boston Beer Works. We used to frequent this drinking establishment in BK (Before Kids). It felt so incredibly normal! The waiter did earn his generous tip by commenting that I didn’t look a day over 24! I guess the lighting was too dim for him to see my developing wrinkles and gray hair!

Jessie is doing well. She missed a couple days of school with a bad cold but she is doing better now. On Wednesday, when her nose had stopped running enough for her to return to school, she broke into a great smile and little giggle when I told her it was time to go to school! She just loves it! She seems to understand more every day. She is also making tremendous progress with her walker. She follows simple commands like stop, back and turn. She has also let go of the walker and taken steps on her own, which elicits applause from her teachers and classmates! They are marvelous cheerleaders!

We finally got some snow last night and it hasn’t melted yet. It will be our first chance to use the sled and skis. Jessie used to love the sled and she didn’t get a chance to try it last winter because she had a stomach bug that lasted 3 months. Dylan will be trying his skis in the backyard for the first time. My brother thinks I am nuts for putting a 15-month old on skis but it is so much easier to learn when you are young!

Matt and I are trying to make our life more normal again. We are going out a little more and getting more active in our community. Jessie’s transplant is, for the most part, behind us, but we will be dealing with MPS for a very long time. We are trying to incorporate it into our everyday life so it doesn’t get in the way of enjoying life. It isn’t always easy, but things worth working hard for seldom are.

Please say a special prayer for our little friend Bryce. He is at Duke for transplant and is currently on a ventilator in the PICU. Although he has made some progress in the last day, he still has a long road to recovery. His family needs some healing prayers.

Thanks for continuing to pray for Jessie and for checking in on her from time to time!

Cari

Friday, January 12, 2007

Well, now that Jessie has seemed to recover from her transplant, maybe I can start to recover. I didn’t realize until recently how worried I was about her. I didn’t realize that I worried every moment that I may lose her. It is something I think you can really only understand if you have had a child in a life-threatening situation. You listen to every breath as if you will notice some change that warns you of illness. You sleep in 15 minute intervals so that a cough does not go unnoticed. There is a constant pit in your stomach because you know that things can change in a second. At any moment there may be a fever that necessitates a run to the emergency room and a possible hospital admission. You can never just relax and breathe.

Well, I can finally breathe. I can enjoy Jessie without worrying that she will be taken from me at any moment. I can sleep (well, until Dylan wakes me with teething pain) and not listen for signs of illness. I can drop Jessie at school and not check my cellphone every second thinking the school is trying to contact me. I can make plans for the future and know that Jessie will be there to brighten my day. It is a beautiful thing.

I know there are a lot of mothers that still have these worries for their children. I know there are a lot of mothers that grieve their child’s passing every moment of every day. My heart goes out to those mothers.

Before Jessie was diagnosed, and certainly before transplant, I was not aware of the world of families dealing with a child’s illness or passing during the holidays. Now, I am all too familiar with this world. Matt and I have both commented on how the experience of transplant has changed us. I think I felt it most during the recent holidays. We are so lucky to have our special daughter. I think of all she has been through at the tender age of 4. She amazes me with the happiness she exudes.

Monday, January 1, 2007

Cari posted new pictures on the photo page (actually, two new pictures and an old one).

We had a wonderful Christmas! Jessie enjoyed spending time with friends and family. She has an amazing ability to remember the people she loves, even when she doesn’t see them for months at a time.

Most kids love Christmas break, but Jessie clearly misses school. It was OK when we were busy with Christmas celebrations, but for the past week, she has been susceptible to boredom. What an amazing change—not long ago, it was brutally hard to get Jessie interested in anything besides her TV shows!

We have our annual meeting this week to discuss Jessie’s educational plan for 2007. The school district has been great so far, so we’re optimistic that the meeting will be uneventful.

We welcomed the new year quietly. Last night, Cari and I remembered the children who were transplanted at Duke around the same time as Jessie. As you know, some of them have died, and among the others, few are doing anywhere near as well as Jessie. We’re deeply grateful for our blessings.

Please say a prayer for Frankie—he is back in the hospital. We don’t think this latest setback is life-threatening, but he is suffering. Also, because he is still immune-suppressed, he can’t play with other children—so he and his parents couldn’t celebrate Christmas with their extended family.

Thanks for checking in. May God bless you in 2007.

Matt

Saturday, December 16, 2006

It has been a busy couple of weeks. Jessie fought off an ear infection and a nasty cold; it’s good to see her immune system responding! Jessie has been on antibiotics, but once those are done, she’ll only be getting one daily medication, to prevent seizures (Keppra), plus Bactrim (antibiotic to prevent pneumonia) three times a week. It’s nice that Jessie can go to bed when she’s tired, instead of waiting for us to finish cramming half a dozen meds down her throat.

Jessie has been off the FK for two weeks now, and she seems to be doing just fine. Cari applies creams to Jessie’s skin once or twice a week, and that’s it. This is incredibly good news—please pray that Jessie continues to do so well!!

The Botox injections Jessie received last month seem to be doing some good. Her left leg has loosened up enough that she can fit into her brace without discomfort. Her right leg (the worse of the two) hasn’t improved noticeably, but the doctor thinks this is due to a muscular problem—the leg has been misshapen for so long that her muscles are shorter than they should be. He recommended a new brace, which Jessie would wear on that leg overnight. We’ll bring Jessie to have that new brace fitted sometime after the holidays.

Dylan’s baptism was beautiful. Special thanks to Rob, Meredith and Ron for serving as godparents—Ron and Meredith took time off work and traveled long distances to be here! Thanks also to Gretchen, our pastor, for writing a beautiful ritual. It was Dylan’s day, but Jessie was the star of the show—she laughed and babbled (loudly) throughout the ceremony, so much so that I had to stifle a laugh as I renounced the powers of evil on Dylan’s behalf. We definitely were right to postpone the baptism until Jessie was well enough to attend!

Tomorrow is our church’s Christmas pageant. Jessie is going to be one of the animals (a cow) in the manger. We wanted Dylan to participate too, but the person coordinating the pageant gently suggested that he might be too young. She’s probably right—it’s hard to keep him in one place longer than 30 seconds.

Once again, I must close on a sad note. Makayla, a baby with MPS-I who was transplanted at Duke 52 days ago, will be removed from life support tomorrow. Please pray for her parents and her older sister Hailey (also a transplant patient—see the link below to her CaringBridge site).

Hanukkah blessings to our Jewish friends!

Saturday, December 2, 2006

The last couple weeks have been bittersweet. Jessie has had her last dose of immunosuppressant and the other drugs that make up that cocktail. We have been able to get our REAL Christmas tree and decorate it. And we are looking forward to seeing family and friends in the weeks leading up to Christmas. But our emotions have been left raw following Olivia’s passing and now with the sudden death of a boy that was transplanted with Jessie. His name was Benjy and he was only 2 years old struggling with Tay-Sachs. He had recovered from the transplant and was making remarkable strides. His parents, Josh and Elizabeth, fought tirelessly to get him the cutting edge therapies that he needed. My heart aches for these parents. These diseases are anything but fair.

We are also praying for Noelle and Frankie. Noelle and her family are back in Durham trying to plot a course to fight her leukemia relapse. I can only imagine the limbo they are feeling as they wait to see if Noelle either goes back into remission or dives straight into relapse. It is no place for a family to be at any time, let alone at the holidays. Frankie, a Sanfilippo patient who was transplanted less than a week after Jessie, is back in the hospital for the second time in two weeks. Frankie is a fighter, and he and his parents are keeping their positive spirit despite Frankie’s current complications.

Several other children are never far from our thoughts. There are children that must spend Christmas in the hospital, away from their siblings and friends. There are families that must face this holiday with a hole in their heart that their child’s laughter once filled. I don’t pretend to understand how difficult that must be.

Because of our experiences over the last 17 months, we are trying to change our focus this Christmas. In past years, we routinely fell into the familiar holiday trap – too much time spent stressing about shopping; too little time spent in repose with family. This year, we hope to focus less on gifts, and more on people. For example, the focus of our Christmas Day celebration will be our family meal. My sister-in-law Heather, who shares our new holiday philosophy, has agreed to lend her considerable culinary talents to the cause! It’s something new for Matt and me, but we’re excited about it. And of course, Jessie is our inspiration—she won’t care (or even notice) how many presents are under the tree, but she’ll care a great deal about being surrounded by her loved ones on such a joyful day.

Thanks for your prayers for Jessie and our Duke friends.

Sunday, November 26, 2006

We had a happy Thanksgiving; hope you did too!

Cari made Thanksgiving dinner for Rob, my parents, and our friends Sean, Ted and Michelle. As usual, the dinner was a masterpiece. Jessie loves turkey—she ate nearly a pound! She also loved Uncle Rob’s pumpkin pie.

On Friday, we met our friends Matt and Claudia in Hartford for dinner. They’re getting married next month in Germany; we’re sad we won’t be able to go! Jessie is getting used to restaurants again. She’s not as excited about eating out as she was before transplant, but so long as we don’t go anyplace really busy, she enjoys it.

Yesterday, we bought our Christmas tree at a local nursery. The nursery has goats and llamas—kind of like a petting zoo, except you can’t pet them. Jessie hadn’t been near farm animals since before transplant, and she loved it! She tried to give one of the goats her binky, but we managed to convince her that wasn’t a good idea. We saw one of Jessie’s teachers at the nursery. Jessie was excited to see her, but she didn’t understand why we didn’t let her get out of her stroller so she could play. She’ll be happy to go back to school tomorrow!

Dylan loved the nursery too—he walked around for about an hour looking at the plants, crafts, and (especially) the goldfish ponds. He was amazingly well-behaved; we almost never had to remind him not to touch!

Thanks for checking in. Please remember Jessie and all the other kids from Duke in your prayers.

Monday, November 20, 2006

Jessie had successful surgery today to remove her central line and replace her ear tubes. She’s resting comfortably at home.

Last Wednesday, Jessie had Botox injections in her calves. Her doctors have wanted to do this for some time, but we had to wait for her immune system to recover. The doctors hope the injections will relax Jessie’s lower-leg muscles. Ideally, this would enable her to stand more flat-footed, and perhaps even allow her to walk without support. I’m not too optimistic about this round of injections—they used the lowest possible dose, and Jessie’s orthopedic problems are pretty severe. If we don’t get good results this time, they’ll inject her with a higher dose in four months. Jessie was very brave for the shots—six in each leg!

We’re making progress weaning Jessie from her medications. Her doctor discontinued her blood pressure medication last week. If all continues to go well, we plan to discontinue FK506 (anti-rejection drug) a week from Friday. Once that’s gone, we can discontinue her antiviral and antifungal meds as well. She’ll continue to take her antibiotic (sulfatrim) three times a week through the winter, and she’ll remain on her anti-seizure medication (Keppra) indefinitely. Naturally, the Keppra is the foulest tasting medicine of them all. We’ve gotten conflicting advice on Keppra—her neurologist here wants to discontinue it because she thinks it’s useless; Doctor Paul thinks she should remain on it, because Jessie is happy and there’s no sense messing with a good situation. By default, we seem to be following a middle path—giving Jessie her Keppra, then having her spit out half of it.

Our Christmas cards arrived a couple days ago. It was eye-opening to compare this year’s picture of Jessie and Dylan to the picture we sent a year ago. Jessie looks like a different child! Jessie has lost a lot, but we still count our blessings. At the same time, though, so many of our friends are suffering. They will observe this Thanksgiving with anxiety and sorrow. Our prayers are with them.

Happy Thanksgiving to all our friends and family. We’re grateful for your prayers.

Matt

Wednesday, November 15, 2006

When Jessie was admitted to 5200 for her transplant, all the nurses commented how much she reminded them of a little Sanfilippo child that had just had her transplant. Her name was Olivia. She was a little older than Jessie and loved music and nursery rhymes. Her mom was one of the first mothers I spoke to when we were contemplating transplant. She was full of hope for her beautiful daughter. The first time I saw Olivia, I couldn't believe how well she was doing and it gave me hope for Jessie.

Olivia's battle with Sanfilippo ended on Sunday. She had experienced horrific complications from her transplant and her body could not fight any longer. I am relieved that her suffering has ended and that she is in a better place where there is no pain.

Please pray for Olivia's parents and younger sister. I know their hearts are heavy with sadness.

Thursday, November 2, 2006

It’s been nearly a month since we’ve updated the site. Sorry about that. Hopefully, most of you figured that no news is good news, because that’s basically been the case.

Jessie has seen lots of doctors in the past four weeks. Most of these visits were routine, at least by our standards. In addition to her usual clinic visit, she has been to the neurologist, two different orthopedists, two different ear doctors, and to get a flu shot. She’ll have surgery in the next month or two to replace her ear tubes and have her central line removed. She’s also being weaned from her anti-seizure medication (Keppra), because our neurologist here doesn’t think it’s doing anything. Meanwhile, we’re slowly reducing the dose on her last immunosuppressant (FK506/tacrolimus), with the goal of having her completely off it by the end of this month. So the medical front is busy, but mostly in a good way.

Jessie has adjusted well to school. The other kids are wonderful to her—I hope their parents are proud!! A few of the kids have taken a special interest in Jessie and have become her friends. She certainly isn’t “normal,” but her life is more normal than we would have dared to hope six months ago.

The school district provided Jessie with a one-on-one aide at school. Jessie’s aide was named Michele, and Jessie immediately fell in love with her! Unfortunately, Michele learned early last week that she has cancer. She has left the school, and even if her treatment is successful, we don’t know if she’ll return. Please pray for this special friend of Jessie’s.

Dylan is doing typical one-year old stuff. Jessie loves to watch him run around. He gave her a kiss for the first time the other day. She didn’t know what to make of it! Also, Dylan sometimes takes it upon himself to bring Jessie her binky. It will be fun to watch their relationship evolve as Dylan surpasses Jessie developmentally—it seems that he’s going to ease into the big-brother role, while still adoring her as his big sister who is always sweet to him!!

Thanks for continuing to check on us and to pray for Jessie. We’re blessed to have so many great friends.

Matt

Friday, October 6, 2006

I have gotten so many e-mail messages asking about Jessie's first day of school that I thought I would do a quick update!

Wednesday was Jessie's first day and she did wonderfully! She explored the room and then realized there were other kids to play with! She loved circle time with all the singing--no big surprise there! By Thursday, she had already made some friends in the class. One of her teachers told Matt that the other kids had become very protective of Jessie and one even protested when a teacher tried to take Jessie's binky away from her for snack time! The teachers have thanked us for sharing Jessie with them but we are the ones that should be thankful for a very dedicated staff!

We also celebrated Dylan's first birthday on Wednesday! I made a cake even though Dylan has continued to refuse to eat anything but babyfood! I put a small piece on his tray and a few minutes later, it was gone! So, the little stinker CAN eat real food, he just prefers not to! Everyday he reminds us how much we took for granted with Jessie--she was such an easy baby!

It is hard to believe that Dylan is a year old already and that Jessie is now playing with other kids! I really thought this day would never come. A lot has happened in the last year and I am mindful of all of our blessings!

On that note, please say special prayers for two of our little transplant friends. Noelle is battling a relapse of her cancer. We pray she stays in remission! Cooper is struggling with a blood disorder as a result of his transplant. We hope this is treated effectively and he can continue to kick some butt with his recovery!

Thanks for all the supportive calls and emails for Jessie on her first day of school! Cari

Sunday, October 1, 2006

We have had a busy couple of weeks full of follow-up appointments and planning meetings. Jessie's ear infections have finally cleared up but it looks like she is going to need new tubes. We got the casting done for her new walking braces. In the process, the orthotist sprained Jessie's ankle and she has not been able to put any weight on it. If it is still sore tomorrow, we will be going for x-rays. After being on steroids for so long, one worries that her bones may be brittle and easily fractured.

Dylan came down with a stomach bug last weekend and gave it to his sister this weekend! Jessie hasn't had a fever, so we aren't too concerned but I worry about her recovery time. After dealing with 3 months of diarrhea, vomitting, not eating and a hospital stay last winter, I have a bit of PTSD! I know her immune system is a lot better now and should recover without so much trouble this time--but I still worry.

After a lot of planning, Jessie is scheduled to start pre-school on Wednesday! It is also Dylan's first birthday so it will be a BIG day! Jessie will be attending the integrated 3 year-old classroom, or the Bunny room, as they call it! There are about 10 kids in the class and Jessie will have a 1 on 1 aid that will "shadow" her to assist with anything that comes up. We are going to start with 2 hours, 3 times a week and increase it as she is ready. It will be a lot of stimulation for her and I think she will love it! They recommend that I bring 2 changes of clothes for her each day because the kids are free to make a mess as they play--Jessie should fit in no problem--she loves to make a mess!

I am starting to wrap my head around the idea that our life is about to return to some type of "normal." Jessie will be in school and allowed to play with other children. Dylan will be able to go to a playgroup and meet kids his own age. I will have time to rejoin my gym and work out a few times a week. We will be able to go to church as a family again. And, just maybe, we won't have to worry about Jessie's health every waking (and sleeping) moment. It is a lot to let sink in!

As always, thanks for checking in on us and keeping Jessie in your prayers! Cari

Saturday, September 16, 2006

I apologize for the lack of updates! We just got home from our trip to Duke for Jessie's belated 1 year studies. It was a long, busy trip but well worth it!

I can never keep a secret (ask my brother around Christmas time) so, I will start with the best news: Jessie has been given the green light to start pre-school! Her immune system is almost 100 percent and we are starting to wean the last of her meds. This was far better news than we ever expected to receive! It may take a few days to set up, but as soon as Children's Way is ready for Jessie, Jessie will be ready for them!

All of her other tests went well. The MRI of her brain was the same as the April scan, which means the deterioration has subsided. This was the first time post-transplant that her brain MRI was not worse than the previous scan--good news! The fluid that had formed on one side of her brain has also resolved a bit. This will most likely be a chronic problem but at least it has gotten better and not worse.

In her developmental evaluations, she has lost skills in some areas (speech) and gained in others (motor). They were all impressed with the progress she has made walking with her new walker. I know her physical therapist deserves a lot of the credit for this! We are going to get new braces that are better equipped for walking and we will start planning for Botox injections in her ankles followed by serial casting. They are hoping that this will stretch her tendons enough so that her heel will be able to touch the floor for the first time in her life! Of course, walking should be easier with her entire foot making contact with the floor.

The only bump in the road was her continued ear infection. Her ears are both completely plugged with wax and seem to still be infected. We saw the ENT and he put her on Cipro ear drops. Getting ears drops into a squirming kid is easier said than done but we are managing. We have to have them re-checked in 10 days to make sure everything has healed. We will then have her hearing re-evaluated.

Everyone at Duke does such a wonderful job making each child feel like they are the center of the universe, and Jessie and Dylan are no exception. It is so sweet that Jessie shares her Duke friends with her brother. He enjoyed showing-off his new walking abilities for anyone that would give him the time of day! He is quite a ham!

This was such a wonderful trip. It will almost make us sad that we are not scheduled to return until next summer for her 2 year studies! They are an amazing group of people!

We are so thankful for your support and prayers! Thanks for always checking in on Jessie! Cari

P.S. There is another little boy from Massachusetts that was recently diagnosed with Sanfilippo. He is currently at Duke with his mom waiting to start his transplant journey. I have added his link at the end of our website. Please say an extra prayer for him that his journey goes smoothly.

Monday, August 28, 2006

Today was Jessie's 4th Birthday.

Jessie developed an ear infection last week. We had planned to have a party on Saturday, but we cancelled. It was a shame-- Jessie was healthy all summer, then got sick a couple days before her birthday party! By Saturday afternoon, she felt well enough to sit outside with us and eat birthday cake. Cari and I were disappointed not to have a gathering of friends, and Dylan would have had fun seeing everyone, but Jessie probably had a better time than she would have if we'd had the party. So I guess we did the right thing.

Tonight, Uncle Rob and Aunt Heather came over for dinner. It was such a treat for Jessie!

I know a few of you have made gifts to Duke's PBMT Family Support Program in honor of Jessie, and I'm sure others have done so without me knowing about it. Cari and I are deeply grateful. It is such a wonderful cause!

We've gotten a few birthday cards for Jessie. She has little interest in presents, but she still likes cards! Something about the pictures, I guess.

We had our first meeting with the folks at MGH's Lysosomal Storage Disorder clinic. As Jessie's transplant-related care tapers off a bit, we'll take Jessie to MGH for her MPS-related care. The genetic specialist we met (Dr. Browning) knows a lot about Sanfilippo, but Jessie is her first patient who had a stem-cell transplant. Dr. Browning was amazed how gentle and sociable Jessie is, and she thinks enzymes from the transplanted cells might be helping in that regard. There's no way to know if this is so, but Cari and I certainly feel better about the decision to go forward with transplant than we have for some time.

Thanks for checking in. We're grateful for your prayers.

Matt

Thursday, August 10, 2006

Yesterday was Jessie's monthly clinic visit. It was a short visit just to check her labs and look at her skin. Everything looks good! Well, except for a small, itchy problem. Since Sunday, Jessie has been scratching at her central line site a lot. It turns out, the poor kid has a small yeast infection around the site. This is causing terrible itching! We now have to change the dressing daily so we can put an ointment on the itchy skin--argh!! She hates this dressing change even on a weekly basis! None of us are looking forward to the next week or so.

We talked a lot about starting to wean the FK and other drugs. Dana Farber feels like she is ready but we are going to wait another month to give Doctor Paul the final say. Once the FK is being weaned, they do not check levels in the blood anymore. This means that Jessie will only need to have her chemistries checked every other month and they can do this with a pin prick on her finger. So, once this happens, there won't be a need for the central line anymore and we can finally have it removed! That will be a good day.

Jessie has continued to enjoy her therapies at the school. Her physical therapist is so excited about the improvements she has seen this summer, that she has decided to continue seeing her through the entire summer (they usually take the better part of August off). We are so lucky to have such dedicated therapists through our school district. They are very special people!

I have started to see a bit of sibling rivalry between Dylan and Jessie lately--most of it coming from Dylan! Dylan is very sweet but he is a bit rough for Jessie. He thinks nothing of swatting her sippy cup out of her hand while she is taking a drink. Or ripping her binky out of her mouth as she watches TV. She takes his beatings and never retaliates--she just looks at me with sad eyes and I tell her that little brothers are mostly just a pain in the neck--I know from experience! At least he does provide some comic relief, so it isn't all bad!

Jessie's birthday is coming up at the end of the month and some of you have asked what she would like for her birthday. I have thought about this a lot. This disease has already taken a lot from Jessie and she has lost interest in many of her toys--they are just too advanced for her now. It has been hard to find any toy that will keep her attention for very long. At the same time, we know so many families at Duke who are struggling to pay for the myriad of expenses that come with transplant. So, we are asking that instead of buying a present for Jessie, you consider sending a donation to the Duke Family Support Program. Even a $10 donation can help a family pay for groceries or parking. This is a great program and they provide assistance to all the families struggling with transplant.
Here is a link to the website: http://cancer.duke.edu/PBMT/support/family.asp
Donations can be sent to:
Jane Schroeder
Family Support Program
Duke Pediatric Blood and Marrow Transplant Program
DUMC 3350
Durham, NC 27710

Thank you for considering this request--it means a lot to us! Peace, Cari

Tuesday, August 1, 2006

We planned to go to Duke last week, but we postponed our trip until September. The stuff we did instead was much more fun, especially for Jessie! The weekend before last, we visited our friends Sara and Dan. It's not clear whether Jessie "remembers" old friends in the usual sense, but she certainly has an immediate comfort level around her favorite people. Sara is one of Jessie's favorites. She might be the only person who can capably fill in for Mom or Dad when Jessie is upset-- so staying with them was a bit of a break for Cari and me too!

This past weekend, our friend Ron (another one of Jessie's favorites) came to visit, along with his girlfriend Jenne. I wasn't sure how Jessie would handle the fact that she's not the only woman in Ron's life anymore, but it couldn't have gone better-- she still loves Ron, and she took quite a liking to Jenne also!

Dylan had fun on both trips and loves our friends too. (Then again, he loves everyone.) He's going through a stage where he can't bear to be away from his Mom, even momentarily. It's adorable, but it makes Cari's job even more difficult.

Jessie's condition is essentially unchanged. She goes to therapy three times a week and is doing well. She hasn't been to clinic in a while, but she'll go next week.

Thanks for your continued prayers.

Matt

Thursday, July 20, 2006

I'm sorry it has been so long since my last update! Not a lot to report these days. Jessie is continuing to do well. She just loves going to the school for therapy. They have seen such an improvement in her strength in the last couple weeks. She walks with her walker with no problems while she is at the school--too bad it doesn't carry over to home! She has been catching up on all that lost sleep. She is still sleeping this morning at 9am! Her skin looks great--only a small patch of rash on each elbow. She is eating like a normal 3 year-old--a bit picky but enough to maintain her weight. All in all, we are still on the right track!

We decided to postpone our trip to Duke until September. It was mainly due to a scheduling problem (one of the docs Jessie needs to see will be on vacation the week we had planned to go) but we are all pretty psyched about not having to go in July! I have a feeling September will be here before we know it--the summer is going way too fast!

I hope everyone is staying cool! Thanks for checking in! Cari

Thursday, July 6, 2006

I hope everyone had a great July 4th weekend! We had a very busy weekend cleaning out the house. Since coming home from Duke, we have felt the need to get rid of our clutter! After being away for several months, we realized we didn't need a lot of the "stuff" we had lying around. So, we finally put aside an entire long weekend and we rented a large dumpster. After 2 days working in the shed and basement, it was 2/3 full! We made some tough decisions about what to get rid of, but in the end, it felt pretty good to lighten the load! And to all those that have driven by and seen the dumpster-- no, we are not moving!

Jessie had her monthly clinic visit yesterday and things continue to look good! She is officially off of all steroids and she had her last dose of Dacluzimab. She has a little bit of GvHD rash on one elbow and one knee but this is not unusual for kids with cord blood transplants. This little bit of rash can persist for years without causing any real problems. We will continue to apply the creams until it completely resolves itself.

The really good news is that they feel Jessie will be ready to start weaning the FK506 (immunosuppressant) in 1 month! Of course, Dr. Paul has the final say, so we will see what he thinks during our next visit to Duke. We are hopeful that he will concur and that Jessie's immune system will be allowed to fully recover over the next several months. Keep your fingers crossed for her!

In other news, Jessie has started to get her therapies on the "outside." We go to the local elementary school 3 times a week for an hour so that she can "play" in the therapy room. She still can't play with other children but she can be in the room all by herself with the therapists. She absolutley loves it! She is excited when we pull in the parking lot of the school--much kicking and clapping! Along with her improved mood, the therapists have seen an improvement in her strength, balance and attention span. She is definitely on the right path!

The summer just seems to be flying by! Dylan just turned 9 months old and I am reluctantly allowing him to grow-up! I guess he can't be my little baby forever--but it would be nice if it lasted a bit longer! He is into everything and seems to be on the verge of walking. We had a discussion that he was not to walk until he is 1 year-old because it would just be too much work for me if he walks sooner. I'm not sure he was listening!

Thanks to all of you for taking the time to check on us! We enjoy hearing from people, even if we can't get out and see everyone yet! I feel like we are finally starting to see a light at the end of this transplant tunnel--but I have learned not to count my chickens until they hatch! Still, it is hard not to be optimistic! Peace, Cari

PS. I forgot to mention that Matt and I were having our big night out on Friday night to go to the Dave Matthews Band at Fenway--Great Concert! Uncle Rob & Aunt Heather babysat and not only were the kids happily asleep when we got home but the lawn was mowed and hedges were trimmed! Now that is service!

Saturday, June 24, 2006 (day 365)

Jessie's transplant was a year ago today. Our feelings are mixed. On one hand, we are blessed and deeply grateful that Jessie is still with us, and slowly recovering from the transplant. On the other hand, her long-term prognosis remains uncertain, and the early signs aren't promising. In the early months, we knew many children who died, and we were simply grateful to have Jessie with us. As that experience slowly recedes into memory, we are beginning to grapple with the second part of the equation-- Jessie's future. It's not easy.

Thank God for Dylan. He forces Cari and I to stay hopeful on the tough days. And I don't know what Jessie would do without him-- his nonstop curiosity and exploration stimulates Jessie more than anything Cari and I (or her therapists) could ever do for her. She is good for him too; no one has a sweeter, more selfless big sister.

We had planned to have a family picnic today to celebrate Jessie's anniversary, but that didn't happen. It's just as well-- it has rained all day. Instead of having a party, Cari and I got our friend Jess to babysit and went to see "An Inconvenient Truth." (Great film, by the way.) I suppose it was a fitting way to mark the occasion; Cari and I have spent far too little time as a couple over the past year.

When you have a major life crisis, you learn who you can count on, and who you can't. Many people focus on the latter part of that and are disappointed, even bitter. I choose to focus on the former part. So many of you have supported us in ways great and small. Please know that we deeply appreciate your support, even if we haven't thanked you properly. It is humbling to know you will never be able to repay your loved ones for their kindness. It has forced me to squelch my ego just a bit, which is undoubtedly a good thing.

Jessie's condition is basically unchanged. She has some patches of GVH rash, and her hair loss appears to be GVH-related as well. None of these symptoms have gotten dramatically worse, so we are continuing to wean Jessie's meds. She will probably get just one or two more doses of dacluzimab, and she is on track to be off her oral steroids in about three weeks. If things continue to go smoothly, we'll begin weaning Jessie's final antirejection drug (Fk 506) sometime in August.

Thanks for all you have done for us. Please continue to keep Jessie in your prayers.

Matt

Sunday, June 18, 2006 5:15 PM EDT

Last year, we observed Father's Day on 5200. This year, the four of us are at home. Sure, life could be better-- I'll never accept that my beautiful girl has this awful disease-- but my gratitude for what I have far exceeds my grief for what I've lost.

Jessie is going through a phase where she likes to give kisses. In the past few minutes, she has kissed Dylan (on the lips!) and me, and I'm sure she'll kiss her Mom when she comes in from the kitchen.

A very mild cold is making its way through our house. Dylan was the first to catch it, and now Jessie has a runny nose. Cari and I both have woken up with scratchy throats the past few days, but so far that's our only symptom. We're hopeful that this bug will be nothing more than a nuisance.

We're continuing to wean Jessie's already-low dose of steroids. So far, it's going smoothly. Jessie screams like she's being attacked when Cari applies the skin creams, but they are keeping Jessie's skin GVH in check. Jessie's hair is continuing to thin out, but as Cari said, this isn't serious. Unfortunately, it does make Jessie look sickly-- thankfully, she's not old enough to be self-conscious about it.

Thanks for checking in. Happy Father's Day!

Matt

Thursday, June 8, 2006 3:29 PM

Jessie has had a good couple of weeks. We went to clinic yesterday after 2 weeks off and things were so good that they are giving us a month off this time! Jessie has continued to eat and sleep well. Her hair is starting to gradually fall out but it isn't anything to worry about. We don't really know why this is happening but I guess it happens occasionally. Her rash looks good and has been kept under control with the creams so we are getting anxious to start weaning the FK506 (immunosuppressant). All in due time!

Jessie has been pretty happy and is even starting to (dare I say) enjoy her therapies. She will be continuing her therapies through the summer and they told me they are saving a spot for her in the integrated pre-school, so it will be there when she is ready! We have been so thankful that the school district has been so flexible with our unique situation.

Just our luck, it is fast becoming the wettest spring in weather history for Massachusetts! The kids love getting out in the stroller, aside from a small toe biting incident (Dylan's toes are too cute for Jessie not to nibble). We watch the other kids at the playground and sometimes see the girls playing softball. Of course, it pains me that I will never be one of those moms watching their daughter play softball, but try to stay positive, right? I will be happy when I can watch Jessie play ANYTHING with some little friends!

Thanks for staying with us for over a year now! People (professionals) tell you not to expect continued interest and support beyond the first few months but our friends have held on! It means a lot to us! Cari

Monday, May 29, 2006 Memorial Day

It was a year ago this weekend that we left for Durham. It was the beginning of the journey to give Jessie an opportunity for a better life. When I think back on everything she has been through in the last year, it is really just amazing. We knew it would be a tough time but no one can prepare you for just how tough it will be. We had to watch Jessie struggle through illness that most of us will never encounter.

Jessie is doing better these days but we still struggle with recovery. We have seen a little resurgence in the rash over the last week. Until this rash is completely gone, Jessie will have to remain on her one serious immunosuppressant. This means that we are still preventing her immune system from recovering 100 percent. It is so hard to have to continue this process. Jessie's MPS has continued to progress and we feel like we need to hurry up and get her back to a "normal" life while she still is able to enjoy it! Unfortunately, there is just no way to rush this recovery process--it sets its own SLOW pace!

We are thankful that Jessie is feeling better and generally a happy kid! She has been an amazing big sister to Dylan and this has been incredible to watch. She still has so much love in her even after what she has been through in the last year.

Thank you for continuing to hang in there with us--I know it has been a long haul! Peace, Cari

Sunday, May 21, 2006

Jessie had the best week she has had in awhile. She ate well, slept well, and was happy except for when Dylan was making it his mission to annoy her! I'm not sure if it was just because she was glad to be home and her digestive system was working normally or if the seizure medication is making a difference. Whatever the reason, it was nice to see her feeling better this week!

We were able to get out a little this week even though it seems to be monsoon season in Boston! We brought the whole family to an outside social gathering at church this morning and it was so nice to be together as a family. It was a little overwhelming for Jessie but I think we need to slowly re-introduce her to small gatherings. Being isolated for such a long time has taken a toll on her social skills.

Our friend Ashley seems to be healing from her liver transplant like a champion! She is an amazing young woman! A couple of our other friends are still having a tough time. Especially Frankie, who is back in the hospital on his third birthday. These kids have endured so much at such a young age. I can only imagine how I would handle what they have been through.

Thank you for the prayers for Jessie and for our other transplant friends. Peace, Cari

Sunday, May 14, 2006 Happy Mother's Day!

New Pics of Rainbow Walk

We are home! We arrived last night after 2 days of driving. Dylan really did not like the trip this time. He gets so lonely facing backwards the entire time! After 3 weeks in an apartment in Durham, the kids were both very happy to see their toys again!

Jessie doing much better. We are still unsure what caused this last episode but several theories are still being considered. She still has her NG tube but it probably won't be re-inserted if she pulls it out now. She has had the same tube for over a week now (without pulling it out) and this is a new record!

Our friend, Ashley, received a new liver last week and is recovering from the major surgery. She gave so many people that care about her a big scare! Thank goodness for the donated liver. It will be a long recovery for her but if anyone can handle it with grace, it is Ashley! Some of our other little friends from Duke are having tough times right now and I just hope things start to turn around for all of them! This recovery process is such a roller coaster!

I hope everyone has a good Mother's Day. I am praying for all the Mothers that lost a child last year and hoping that they can find some peace today. Cari

Wednesday, May 10, 2006 8:45 P.M.

Sorry we haven’t posted in a while.

For the past two days, our thoughts and prayers have been with our friend Ashley. Ashley is a teenager who had aplastic anemia and received a bone marrow transplant last year. Ashley has always taken a special interest in Jessie, who loves her! Transplant is a complete cure for aplastic anemia. So when we saw Ashley at clinic last week and she was doing great, we figured she was getting ready to resume a normal life. Yesterday, however, we learned that Ashley’s liver had failed. She is in intensive care and needs a liver transplant right away (within a week, at most) if she is to survive. It’s devastating news—Ashley is a sweet person and has already been through so much. Please pray for her and her family.

I flew home on Sunday. I’m flying back to Durham on Friday. In the meantime, Cari is taking care of Jessie and Dylan by herself. To say this is a tough job would be an understatement.

Jessie is doing better. In the past few days, she has finally started eating again. Unfortunately, she’s still uncomfortable, and she is having trouble sleeping. The anti-seizure medication can cause hyperactivity, so Cari mentioned this to Doctor Paul. He wants us to keep her on the medication for a couple weeks, until Jessie can have a follow-up EEG (in Boston). I’m not sure I understand the logic—if the meds are making Jessie miserable, we aren’t going to keep giving them to her. But hey, I’m not a doctor.

Jessie’s endoscopy found no evidence of GvHD. Meanwhile, a stool sample from Dana Farber that has been growing for a few weeks just tested positive for adenovirus. Doctor Paul told us that this test is more sensitive than the test at Duke (which provides results in a day or two), but he feels that if the quicker test didn’t detect the virus, it wasn’t present in large enough numbers to pose a serious problem. It could, however, be responsible for Jessie’s recent symptoms. So now that the mystery is solved (sort of) and Jessie seems to be on the mend, Doctor Paul cleared us to return home.

Doctor Paul reduced Jessie’s steroid dose back to where it was when we arrived in Durham. He also is going to reduce her infusions of dacluzimab from every other week to once a month. Once she is off those two drugs completely, they will wean the FK506. Once she is off that, most of the other drugs should go away quickly. We hope Jessie can start school in September, but that may be too optimistic.

Last Saturday, we went to the “Rainbow of Heroes” walk. This is an annual fundraiser for the transplant unit’s family support program. Kate and Michael (and their families) came back to Durham for the event. We got to meet Kate’s older sister Caroline for the first time. (Caroline and Kate have the same disease, but by the time of Caroline’s diagnosis, it was too late to help her.) We also visited briefly with A.J.’s mom. I can’t imagine what she’s going through, but she is facing it courageously.

Best wishes to our friends Kevin and Katie, who welcomed a beautiful baby boy into the world a few days ago!

Thanks for checking in, and for praying for Jessie. She is lucky to have so many people who love her! We’ll update the site once we’re home together again.

Matt

Sunday, April 30, 2006 3:00 PM EDT

Our quick 3 day visit to Duke has been extended indefinitely. Jessie may have been fighting off a virus in February and March but this bout of GI trouble is most likely due to GvHD (Graft v Host Disease) of the GI tract. Her viral screens all came back negative and her immune system study indicates a recent onset of GvHD. An endoscopy under general anesthesia is scheduled for Tuesday to determine the severity of the attack. Since Jessie is so sensitive to the steroids, another treatment will be tried before we have to resort to the dreaded steroids again.

Jessie’s EEG results were also troubling. At her 6 month studies, her EEG showed slowing of her brain waves for the first time. This time the test also showed epileptogenic potential in the right temporal region. This indicates either simple seizure activity or pre-seizure activity. We will most likely start a medication next week that is designed to reduce this activity. The medication has very few side effects and hopefully will not cause some of the grogginess associated with most seizure medications.

We did receive some encouraging news about the recovery of Jessie’s immune system. Since most of her immunosuppressant drugs have been weaned (except for the FK506), her immune system has recovered significantly. Some areas are now in the normal range! Other areas have recovered 75 and 50 percent. Unfortunately, the cells that have been attacked by the GvHD are down to only 10 percent. We are hopeful that once the GvHD is under control, her immune system will bounce back and that this will not set her recovery back for an extended period. Doctor Paul did loosen her restrictions a bit and she is now allowed to go outside without her mask as long as she avoids crowded areas. She must continue to wear her mask indoors but it is still a huge improvement for her!

Being back at Duke has reminded me how wonderful the staff is from the Pediatric Bone Marrow Transplant Team. The nurses all treat Jessie like she is a princess returning to her kingdom (even when they are too busy to take a bathroom break!). Dylan is treated like a Rock Star by everyone he encounters. Nowhere else can you run into family after family with a child that has been diagnosed with some horrible disease and have them so willing to offer YOU support! This is a truly amazing place and we are lucky to be here getting Jessie the best treatment that is available. That being said, I will be glad to return home in the near future!

Peace,
Cari

Thursday, April 27, 2006

Sorry for the lack of updates! We are down in NC and Jessie has endured her 3 days of testing! I will post more later!

Saturday, April 15, 2006 9:35 PM EDT

Jessie had an up-and-down week. At clinic on Wednesday, they cut her steroid dose from every day to every other day. On Thursday, she got no steroids for the first time in months. Her rash didn't flare up, and she was extremely happy! Unfortunately, she vomited that night. The Zofran has controlled her nausea since then, but she doesn't feel as well as she did a few days ago. I think this could be steroid withdrawal; Cari is pretty sure it's something else (possibly a stomach bug, or a flare-up of the adenovirus). With luck, Jessie will feel better in a few days, and we'll never know what made her sick.

Unless Jessie takes a turn for the worse, we'll have a busy Easter. In the morning, we'll take Jessie and Dylan to the Easter egg hunt at church. Most of our friends there haven't seen Jessie since last spring and haven't met Dylan at all-- the kids will be little celebrities! (Jessie will wear her mask, of course, and we won't let people come too close.) After church, we'll have Easter dinner at our house with Rob, Heather, my parents, and two close friends. We'll serve chicken parmesan-- not traditional Easter fare, but I can make it in advance. Cari is making her famous carrot cake for dessert.

Our friend Priya took Cari to the Red Sox game on Thursday night. It was Cari's first trip to Fenway Park since the 2004 World Series-- which is hard to believe, considering how many games we went to before Jessie's diagnosis. More importantly, it had been far too long since Cari spent quality time with Priya. Priya recently got engaged and is moving to New York City. We're happy for her, but we'll miss her!

Happy Easter and Happy Passover.

Matt

Friday, April 7, 2006 2PM

Jessie is now more than 9 months post-transplant and she is finally feeling much better. Now that some of the urgency has passed, it's the little things that are starting to really wear on me. Let me give you some examples:

1. I am tired of having to give Jessie 6-7 medications every morning and evening, especially on the weekends when we would love to just relax and drink our coffee in the morning;
2. I am tired of putting creams on her arms and legs three times a day while she cries like I am beating her;
3. I am tired of making her wear a surgical mask when we go out in the stroller (or out anywhere for that matter);
4. I am tired of not being able to run to the grocery store during the week (or the post office, or Target, or any other errand);
5. I hate having to torture her with a dressing change once a week-- she still has 1 central line and its dressing is painful to remove;
6. I wish I didn't still have a heart attack every time she sneezes;
7. I wish I could just stop worrying about how much she eats and drinks everyday; and of course,
8. I wish she could go and play with some of her friends!

I guess it is really good news that these are the things that I am complaining about these days! Real progress.

Saturday, April 1, 2006 1:00 PM EST

It has been a quiet week. Jessie has been constipated, so she doesn't feel as well as she otherwise might. At clinic, they said it's common for kids recovering from prolonged diarrhea to develop the opposite problem. They aren't concerned.

Jessie's taste buds are coming back. As a result, she has begun to object strenuously to taking her medications. I can't blame her-- some of them taste awful. Jessie's food preferences are also changing. She'll still eat the chicken nuggets we buy in industrial-size bags at BJs, but they aren't her favorite anymore. She likes eggs, and she has started to try other foods again too. We hope this will continue-- before transplant, Jessie ate a varied diet for a young child.

Dylan is teething. I think we'll see his first tooth erupt in about a week. He wakes up in pain three or four times in a typical night. I don't recall Jessie being this uncomfortable-- she was always a trooper, even if we didn't appreciate it at the time.

It was great to see Karen and Barry last weekend. Jessie warmed up to Barry right away. Within ten minutes, she was sitting in his lap while he read to her. We've been concerned that Jessie might become shy and withdrawn, so we were happy to see this!

--------------

I was about to post this a half hour ago, then suddenly there was a loud THUD! Cari and I knew right away what it was-- Dylan had fallen out of bed. We ran upstairs in a panic. Dylan seems to be fine. We called the doctor; she didn't seem too worried, because he cried right away (which means he didn't lose consciousness). We haven't ruled out a precautionary trip to the ER, but right now we're leaning against it.

That's what I get for saying we've had a quiet week.

Thanks for checking in. Have a great weekend.

Matt

Sunday, March 26, 2006 12:15 AM EST

Jessie had a routine clinic visit this week. Despite her Atkins-style diet of chicken nuggets and eggs, she's maintaining her weight. They're reducing her dacluzimab (IV antirejection medication) from every week to every other week; this was the first week she didn't receive it. Her rash hasn't gotten worse, so that's good news.

As Jessie's health improves, she's becoming impatient about her confinement. If Dylan wasn't here to entertain her, it would be much worse. The weather has been unseasonably warm, so Cari has taken the kids on several walks around the neighborhood in the past couple weeks.

We can't wait to see Barry and Karen today! They have always been there for us in hard times, and the past year has been no exception. We are richly blessed to have such wonderful friends.

We are grateful for your prayers.

Peace,
Matt

Friday, March 17, 2006 7:32 AM HAPPY ST PATRICK'S DAY

Since Jessie seems to be wrapping up this illness she's been battling for 2 months, I thought I would update on OTHER things that are going on at our house!

On the medical front, Jessie is down to a very low maintenance dose of steroids and she seems to have no ill effects from this dose. She is completely off of Cellcept, which is one of the immunosuppressant drugs. She is also being weaned from the IV drug she receives weekly at clinic (Dacluzimab- which depresses T cell development). We have seen a little bit of rash come back on her thighs but we seem to be controlling it with topicals. This means that we are starting to let Jessie's immune system recover a little more. Maybe we are headed in the right direction!

Now that Jessie has her energy back, we have resumed her therapies. She gets physical therapy twice a week and speech and occupational each once a week in our house. She has regained some of the skills she lost in December and January. She is using more words and also signs for "eat" and "more"-- I have already started to teach Dylan some signs and I hope Jessie catches on while he is learning. The best part is that she has started "singing" again! When Jessie "sings" (it is more like hums), you can make out the tune to Twinkle, Twinkle or Row, Row, Row Your Boat or one of her other favorites. She is trying to remember the hand motions to the songs too but right now she only remembers Twinkle, Twinkle. I catch her studying her hands as she moves them in different ways like she will remember the correct motion when she sees it. It makes me so happy!

Jessie and Dylan have started to interact much more. Dylan is trying his darndest to crawl (that will be the end to my peace and quiet) and he gets very frustrated when he can't get the toy he wants. Jessie will bring him a toy or play with his hands and feet to distract him. Dylan also gets very upset when Jessie cries. He starts with a very big pout and then the full-blown cry comes, which is very rare for him. It is so cute! Jessie, on the other hand, isn't really bothered at all when he cries. I hope they are close as they grow-up. It is probably not realistic to think that they will be as close as I am with my brother but I hope they always have a good relationship. One more reason this transplant needs to work!

I hope everyone has a good St. Patrick's Day! Happy Birthday Tara! Thanks for keeping Jessie in your prayers. Peace, Cari

Tuesday, March 14, 2006 4:30 PM

We finally have our culprit. Jessie's stool samples finally came back today. She has been suffering from the Adenovirus for the last several weeks. This is a fairly common virus but it can be potentially lethal to transplant kids if it attacks the respiratory system. Lucky for us, Jessie seems to have kept it contained to her GI system. Her blood has tested negative, so this is good news. It explains her 6 plus weeks of mysterious symptoms. I guess they were correct, not GvHD of the gut!

Jessie is getting better. She is starting to eat again and her diarrhea has improved. She pulled her NG tube out again and they decided to leave it out and see how she does over the next week. She has maintained her weight over the last 2 weeks and is now just 1.5 pounds below her pre-transplant weight. I am just so thankful that she had some reserves leftover from the weight gain she experienced while on the steroids. If it weren't for that, we would have one underweight kid!

All of us transplant parents know children that have died from complications caused by this virus. We are just grateful that Jessie is doing as well as she is right now. I feel like we just dodged a bullet.

Thank you for all the prayers for Jessie. She continues to amaze us with her strength and grace! Peace, Cari

Thursday, March 9, 2006 7:18 AM

There is just way too much adventure in our life these days. Jessie had a couple of good days with no vomiting, less diarrhea and more energy. I thought she had finally licked whatever it is that is making her sick. Then, yesterday, she woke with diarrhea and vomiting again. Her NG tube came out during an episode and we had to go back to clinic for the second time this week to have it put back in. Since it was short notice, I had to take Dylan with us and that is always an adventure. He loves going anywhere and was all smiles for the nurses, who of course love him. They put the tube back in through her nose and then sent us across the street for an x-ray to make sure it was placed correctly. I was not prepared for this, so a nurse agreed to "take care" of the kids while I ran back to the car to get the double stroller. Of course, in the 3 minutes I was gone, Dylan spit up all over the nice nurse. She was amazingly cheery about it considering she probably didn't have a change of clothes with her. We made the trip across the street in the nice weather and both kids thought it was fun to get out. They took the x-ray and back we went. Somewhere in all of this, Dylan lost a sock--just kicked it off while we were crossing the street. The tube was readjusted and we were done. Even Jessie was in a good mood considering she just had a tube shoved down her nose!

The nurses all laugh at me when I show up with both kids in tow. I must look like I am juggling 5 balls in the air--at least that is how I feel. I could use a solid week of uneventful boredom!

They still have no idea what is causing Jessie's symptoms. The NG tube is helping. Jessie is at least getting some nutrition and staying hydrated. They are putting the scope off for 2 more weeks. They hope Jessie will get better and she will not need the procedure. Jessie does not have the "classic" symptoms of GvHD of the gut but they do not realize that nothing about Jessie is "classic." I just hope they are right.

As always, thanks for checking in on us. We appreciate all of you that have stayed with us for the long haul! Take care- Cari

Saturday, March 4, 2006 9:30 AM EST

Jessie came home late yesterday afternoon. A nurse visited in the evening to show us how to operate the pump attached to Jessie's feeding tube. As soon as the nurse arrived, Jessie pulled the tube out! Fortunately, the nurse was able to place it again, and Jessie has left it alone since then (knock on wood). Unfortunately, the poor kid has to wear socks on her hands so she can't pull the tube out so easily.

We still don't know why Jessie is sick. All the tests and cultures came back negative. GVH is still a possibility, but the doctors want to wait at least a few more days before they do a biopsy to test for that.

Our friend Mary Ellen went home on Thursday after a four-day visit. She was a tremendous help-- thanks Mary Ellen!! Unfortunately, as soon as she got home, she was stricken by a stomach bug. There are two possibilities. One is that she caught the bug from Jessie-- which would be good news, because it would explain why Jessie is still sick. The other is that Mary Ellen caught the bug somewhere else (either before she came, or during the long hours she spent in the hospital with us). Obviously, that would be bad, because Jessie would presumably be at risk too. We'll never know for sure, but we'll watch Jessie closely the next few days in case she takes a turn for the worse.

Jessie had an MRI of her brain yesterday. There is less fluid on her brain than there was when she had her scan at Duke in January. So at least for now, Jessie doesn't need surgery to place a shunt in her brain-- good news!

Jessie is in good spirits this morning. She's happy to be home, and the IV nutrients seem to have restored some of the energy her illness sapped from her.

Thanks to everyone who reached out to us and said special prayers for Jessie this week. We especially thank our friend Ingrid, who took care of Dylan the past three days so I could work while Cari was with Jessie. Thanks also to our two pastors (Ken and Gretchen) and Jessie's pediatrician (Dr. Mandell) for visiting Jessie in the hospital.

We hope to have a relaxing weekend. Cari threw out her back on Thursday, but she has fought through the pain the last two days to continue to care for Jessie during the day, and Dylan at night. I hope I can ease her burden a bit this weekend.

Thanks for checking in. We are blessed to have many good friends.

Matt

Wednesday, March 1, 2006 12:24 AM

March has entered like a lion for us! Jessie was admitted to Children's Hospital Bone Marrow Unit yesterday after a long day in clinic. She has continued to have diarrhea and, although the Zofran is controlling the vomiting, she is still not able (or willing) to eat. They are planning to do a number of tests in the next couple days to try and determine the cause of this 4 plus week episode. The big tests on the menu include a scope of her entire digestive system to determine if she has GvHD and an MRI of her brain to assess the amount of fluid. She must be sedated for both of these tests. Jessie is generally peeved that she is back in the hospital and is beginning to tire of her assortment of Wiggles dvds-- this admission best be brief!!

Matt stayed the night with Jessie last night because, as crazy as it sounds, he would rather sleep with Jessie in a hopsital bed than deal with a hungry Dylan in the middle of the night! My friend Mary Ellen is visiting from Rochester this week and she has been enormously helpful! Dylan is also staying with his best buddy Ingrid during the day so that Matt can work and I can take care of Jessie. Everyone should have a friend like Ingrid! I joke that she is what Martha Stewart wishes she could be! Ingrid can take care of the kids, whip up a meal, wrap gift breads with bows, and is the nicest person you'll ever meet!

Thank you to all our friends that have helped us in so many ways over the last several months-- there is really no way to say thank you or to express my sincere gratitude! Cari

Friday, February 24, 2006 7:50 AM

For the first time since Oct. 5, Jessie has fallen below her pre-transplant weight. She has lost 18f her bodyweight in 4 weeks (insert joke about Kirstie Alley here). On Tuesday, I thought things were getting better. Jessie felt better so I skipped the Zofran. She ate a couple bites of a chicken nugget and drank a reasonable amount. But then Wednesday morning the vomiting started again.

Yesterday was a long day in clinic. Jessie needed IV hydration and we had a GI consult. They came up with a new game plan because waiting this thing out is clearly not working. They adjusted some of her meds, including taking a "holiday" from one med that may cause diarrhea. They are running some more studies for obscure parasites and another check for viruses. If by Monday, Jessie is not doing better and they have not located a cause, then Jessie will be admitted to the hospital for a complete work-up. This will include a scope of her digestive system (under general anesthesia). The scope is the only way to diagnose GvHD of the gut. I really hope a hospital admission is not necessary because I can't quite figure out how I will take care of both Dylan and Jessie when they are in different locations!

We have been in constant contact with Doctor Paul at Duke and he is overseeing things from afar. As much as I like being home, I have found myself wishing we were back at Duke. I just have this trust in Doctor Paul that I don't have with other doctors. Our docs here are very good and they deserve my trust but I just haven't reached that point yet. I'm sure they will do a fine job and I will run everything by Doctor Paul just to be on the safe side!

I hope everyone has a good weekend. Jessie is still in need of your prayers- thanks for sticking with us through this marathon! Peace, Cari

Monday, February 20, 2006 8:04 AM

Jessie has had a rough week. She is still fighting a stomach bug. They now think she has had back-to-back stomach viruses. All of the cultures have come back negative for serious viruses or infections but they can't test for every run of the mill stomach virus. On Thursday, we decided to try an anti-nausea drug called Zofran to stop the vomiting. It seemed to help and Jessie has been able to keep down fluids since then and has kept herself hydrated all weekend without IV fluids. She still is not eating and they are beginning to get concerned about her weightloss. She has dropped all the weight she had gained while on the steroids--thank goodness she had a few extra pounds on her! Unfortunately, the diarrhea has persisted and we hope that begins to improve today. If things do not improve by Thursday, there is a chance they will want to put her back on the steroids in case she is experiencing Graft v. Host Disease of the gut instead of a stomach virus. We really don't want that to happen!

I am always glad to see spring come, but this year, it will be on a completely new level! I can't imagine what it must be like for a 3 year-old to feel sick for this long. She really has no energy at all and just sits in the beanbag for most of the day-- it is so unlike her!

Please pray that spring comes early this year! I hope everyone had a good weekend. Thanks for checking in on us! Take care- Cari

Monday, February 13, 2006 7:24 AM

Well, it is just our luck. The first major Nor'Easter of the winter and Jessie needs to go to the emergency room. It was our first trip ever to the ER with one of the kids (which is a small miracle). Jessie has been fighting a stomach bug for about 2 weeks now and yesterday she was dehydrated. She hasn't really been eating and barely drinking, so when the vomitting and diarrhea picked up again yesterday, I wasn't surprised she was dehydrated. Matt stayed home with Dylan and Jessie and I ventured into the city to go to Children's. Dana-Farber does not have clinic hours during the weekend so you have to go to the ER at Children's. They had an isolation room ready for us and the place was so quiet. The nurses said it was the quietest it has ever been on a Sunday afternoon. We were there for about 4 hours for IV fluids and sugar. Jessie obviously felt a lot better afterward. They are a little concerned that she is not able to keep herself hydrated- I'm sure it will mean more tests this week! All in all, it wasn't that bad. By the time we were leaving, Jessie was smiling and saying "bye" to all her new buddies in the ER!

On a side note, today is Matt's 32nd birthday (what a youngster). I obviously did not make it to the grocery store yesterday to pick up ingredients for a great birthday dinner but the day isn't over yet! We did get to go out for lunch on Saturday while Matt's parents watched the kids. It was our first time out since before transplant- last May! It was really nice to be out just the 2 of us but what we realized was that we really miss being able to go out as a family. Jessie loves to go out to eat and it will be so fun to be able to take her out when she recovers a little more.

On Friday, we got results from Jessie's enzyme tests that were done as part of her 6 month studies. The test came back normal! Jessie still has a slightly elevated storage of GAGs (the complex carb that accumulates in her body) but it is within the normal range. Dylan's test came back normal as well. Now we just need it to start to help in her brain--that will be the true test of success!

What a busy weekend- I'm hoping things calm down a bit today but it is a neverending circus in our house these days! Thanks for continuing to pray for Jessie. Peace, Cari

Wednesday, February 8, 2006 6:27 PM

Jessie is starting to feel better this week. We have assumed that her stomach has still been upset from the bug she had because she is barely eating. She has lost over 2 kilos in 2 weeks. She is still about 2 kilos above her pre-transplant weight so we aren't concerned about the weight loss yet. Her doc is a bit concerned about her appetite and will need to start thinking about possible reasons for the loss if it continues into next week. On an encouraging note, Jessie did eat a couple bites of scrambled egg for breakfast and 1 chicken nugget for lunch. The days of 8 chicken nugget lunches may be behind us for good! Jessie is down to a very low dose of steroids now and this may be contributing to her low appetite. Is there no middle ground?!

Jessie's weekly appointment went well. Her numbers showed that she is dehydrated so she received some IV fluids and that perked her right up! She also got her weekly dose of Dacluzimab. This is the IV drug that they are using to fight her GvHD rash instead of steroids. It is doing a wonderful job! Jessie's rash is very mild now. This drug really does a number on her immune system (T cells specifically) so we need to continue our vigilance for awhile longer.

Dylan had his 4 month check-up today. Our pediatrician couldn't believe how much he has grown since his last appointment. He has grown a few inches and is now around the 75th%ile for length. He is back to the 50th%ile for weight. He is taking after his dad- tall and thin! Matt was this way until he caught up to his metabolism sometime during grad school! Dylan so enjoys getting out of the house and seeing the world. It was so fun to watch him during our trip to Duke last month. His eyes were the size of quarters when he realized there is a world outside of our home! He also flirted with all of Jessie's nurses-- what a little ladies man!

Thanks for checking in on Jessie. We appreciate all the support we have been getting these last few weeks! Peace, Cari

Saturday, February 4, 2006 11:40 AM EST

It has been a challenging week. Last Friday, Jessie was watching her morning TV shows when she suddenly became fussy. Vomiting and diarrhea followed. Worse, she developed a low-grade fever later in the day, and we were convinced we were headed to Dana Farber for some IV infusions, and perhaps an overnight stay at Children's Hospital. Fortunately, at the right moment Friday afternoon, Jessie's temperature dipped just below the 100.4 degree cut-off for a fever and stabilized there, so we didn't have to bring Jessie to the doctor.

But wait, the story gets better...

Early Sunday morning (i.e., in the middle of the night), Cari awoke with the same symptoms as Jessie, plus a 102 degree fever. She continued to nurse Dylan, but otherwise she was essentially bedridden on Sunday. She felt slightly better on Monday, and by Tuesday she was on the mend. Cari said she had intense, painful stomach cramps, and those of you who know Cari (or are regular readers of this site) know she is anything but wimpy. She is amazed, as am I, how stoically Jessie endured her illness. She is a brave little girl.

But wait, there's more...

Also beginning late last week, Dylan started having revolting diarrhea. He had no fever, so for a while we did nothing-- our pediatrician has told us that a baby can have diarrhea for up to two weeks before it becomes a concern, so long as there is no fever or dehydration. When Dylan began vomiting, however, Cari called the doctor, and he suggested a 24-hour fast (Pedialyte only). In the short run, this made Dylan miserable, as he was starving, but it seems to have done the trick.

As for me, I've been waiting for the other shoe to drop. It's starting to look like I'll be OK. It would have been better for the family if I had gotten sick and Cari had not, but I'm just grateful that one of us was always healthy.

Jessie is on the mend, though as you'd expect, she's recovering much more slowly than Cari and Dylan. Her clinic appointment on Wednesday was uneventful. She had lost two pounds (probably a good thing), and her blood work was all normal. The normal blood tests were reassuring, because we were concerned that Jessie might be dehydrated. Unfortunately, Jessie's stomach is still upset, so she has been restricted to a diet of Cheerios and toast for the past week. It's challenging to get Jessie to eat enough. We're not concerned about weight loss, but some of her meds are hard to take on an empty stomach. Sometimes we have to prioritize-- some meds are crucial; others can be skipped once without harm.

We were well enough by Thursday to have a mini-celebration for Cari's 34th (!!) birthday. Rob and Heather came over, and Heather prepared make-your-own individual pizzas for all of us! (We did our own toppings; Heather did everything else.) After dinner, we watched the season premiere of Survivor. It was a lot of fun-- thanks guys!!

Thanks to our friends and family who have checked in on us the past few weeks. These aren't easy times. The medical news is bad enough, but the worst part is that Jessie doesn't seem like the same kid she was before transplant, or even like she was three months ago when we left Duke. I don't second-guess our decision to put Jessie through this process, but I'm not optimistic that our decision will be the right one in hindsight.

As always, we are grateful for your prayers.

Matt

Thursday, January 26, 2006 Day 216

This week has been hard for us. We are concerned about Jessie's 6 month test results. We are also trying to stay positive and hopeful but it has gotten more difficult.

Jessie's steroids have been weaned further and her rash is about the same. The rash looks worse than it is apparently. Doctor Paul did not think it was that bad and is more concerned with the potential damage the steroids are doing in Jessie's brain. So, we will continue to wean the steroids and watch to make sure the rash does not get out of control.

We are treating Jessie with Tylenol when she cries. Doctor Paul is concerned the fluid building up around her brain is causing headaches. It does seem to help, although it is hard to tell if it is the Tylenol or the reduction in steroids that is relieving some of her crying episodes.

Jessie's immune system function tests came back and they show a little improvement from the 100 day studies. She is still behind considering her age but Doctor Paul thinks it would make sense to repeat the tests in a month when she is on less steroids. He did comment that her immune system might be functioning better than the numbers would indicate because she has been infection free (no cold or flu). He commented that we cannot keep her in a "sterile" environment. I don't think he fully appreciates just how isolated we keep Jessie. She does not leave the house except to go to clinic (or a short stroller ride outside). Dylan leaves the house even less often! I still go grocery shopping every week but other than that and church, I almost never get out. Jessie has not been out in public since her transplant- the poor child! Matt and I have discussed loosening the restrictions after cold and flu season because we need to balance keeping her away from germs with letting her live her life. She has been robbed of 7 months of her childhood so far and we fear that this is just the beginning. MPS will likely rob her of more in the future.

Thank you for the support I have recieved this week. An email, card or phone call goes a long way! I don't know how our family would get through this without you! Take care, Cari

PS- I added new (and old) pictures this week.

Saturday, January 21, 2006 3:10 PM EST

We got back from Durham last night. The news is not good. The MRI of Jessie's brain shows significant deterioration since her last MRI a few months ago. It also shows fluid on Jessie's brain. The doctors feel no immediate action is necessary, but Jessie will have another MRI in six weeks. If that scan shows an increase in the amount of fluid, they will drain it.

Jessie's other test results were also not good. Her EEG (brain wave scan) showed abnormal activity, which was not present pre-transplant. In the developmental assessment, they observed that Jessie has lost some skills, which we knew. They also noticed that Jessie has developed some behaviors that are characteristic of more advanced Sanfilippo Syndrome.

Doctor Paul and Jessie's doctor in Boston (Dr. Lehmann) have agreed on a revised course of treatment. Because Jessie's GVH rash is relatively mild, they will treat it less aggressively. In particular, they are cutting back dramatically on Jessie's steroid dose. Doctor Paul thinks the steroids may be at least partly responsible for Jessie's rapid decline. I hope he's right, but I'm afraid the reality is much worse than that.

We're going back to Duke the last week of April. Jessie's needs between now and then (including draining fluid from her brain, if necessary) can be handled in Boston.

We didn't get all this bad news until Thursday evening, so we had some lighter moments on our trip. We stopped on the way down and spent a night with our friends Sara and Dan, who live near Philadelphia. Jessie was excited to be at someone else's house! Even better, Sara and Dan have a golden retriever, and they were also taking care of Sara's parents' dog, who is also a golden. Jessie loved the dogs!! She wasn't scared at all, even when they were excited and ran circles around her. One of them became Jessie's special friend almost immediately. He gave Jessie lots of kisses, and Jessie let him eat a chicken nugget right out of her hand. (Sorry, Barry and Karen!) And of course, Jessie has always had a special bond with Sara, who is Jessie's godmother. All in all, that evening was probably Jessie's best experience since her transplant. In light of that, Cari and I are questioning our decision to keep Jessie under a strict quarantine. We probably won't change anything until after cold and flu season, but we might make some changes in the spring, especially if her long-term prognosis is not good.

We also got to visit with friends in Durham, including Cheryl, Jessie's transplant nurse. Cheryl is leaving Duke next month. She is signing up for a stint as a traveling nurse. That will take her to southern California, and probably a few other places too. We'll be sad not to see Cheryl on our visits to Durham.

Obviously, Jessie needs your prayers, as does the rest of our family. Thanks for your continuing support in this difficult time.

Matt

Thursday, January 12, 2006

It has been a frustrating week for us. Jessie's graft v. host disease rash came back last week and it is being very persistent! She is now on more steroids and almost back up to the full dose of Cellcept (immunosuppressant). We had our first unscheduled visit to Dana-Farber on Monday to check the rash. Then we were back again yesterday for her regular visit. Her numbers all continue to look good but she can't be taken off all of this medicine until the rash is under control. The steroids make her miserable and we are all ready to start getting her off of them! It just seems like we have been treading water the last 2 months without making any real progress. How frustrating!

We are getting ready for our trip back to Duke on Sunday. It will be good to get a thorough check-up for Jessie. Nothing will ever live up to Duke for us but we have gotten a bit spoiled by Dana-Farber. There are some perks to having the Red Sox raise money for you (the Red Sox raise money for the Jimmy Fund and the kid's clinic at Dana-Farber is the Jimmy Fund Clinic).

First off, we never worry about parking. There is an attached garage on the clinic and we park on the third floor, go through 2 sliding doors and we are in the clinic! We never wait in a waiting room because they have ample isolation rooms. Each isolation room has a bed, a desk, a bathroom (just for the kids), a TV with a DVD player and VCR. Everything is very modern. If you are there at breakfast or lunch time, you just fill out a menu and they bring you a meal. If you do need to wait in the waiting room, they have portable DVD players, 3 computers with internet, and 2 staff members who will assist you with any arts or crafts you are interested in! They also have a huge resource room that I haven't even been able to check out yet. On Sunday night, they had a special event at a local restaurant where the kids could meet members of the Red Sox team. Obviously, Jessie couldn't go this time but hopefully they will have more in the future.

Thank you for hanging in there with us! It has been amazing to see how many of you have followed Jessie through the first 6 months of this journey!
Take care- Cari

Thursday, January 5, 2006 11:43 AM

Happy New Year! Although we are not sad to see 2005 go, it wasn't all bad. It did bring us our son, Dylan, and he is quite a blessing!

Jessie's recovery continues to be 2 steps foward and 1 step back! The docs at Dana-Farber have been weaning her from her immunosuppressant (Cellcept) and she is almost completely off of it. At the same time, they have been slowly weaning her from the steroid. Everything was going fine and then Monday the rash came back. So, yesterday they decided to go back up on the steroid to get the rash under control again and to hold tight on the Cellcept for 1 more week. They hope that they will be able to continue with the wean of the Cellcept next week but it looks like the steroid won't be going anywhere for awhile longer!

In the meantime, Jessie is now tipping the scales at over 50 pounds and my back is breaking! The poor kid is constantly hungry due to the steroids and she insists on chicken nuggets at every meal. She now cries when I suggest toast and eggs for breakfast instead of chicken. Needless to say, she gets her chicken!

We are getting ready for our trip back to Duke next weekend. It will be a busy week of tests but it will also be nice to see some friends and enjoy some warmer weather! I am looking forward to the trip in our new mini-van--complete with a DVD player in the back for a Wiggles marathon!

We are all doing well and have managed to stay healthy so far this winter(knock on some wood fast). Jessie, Dylan and I rarely leave the house but Matt goes to work every day and is exposed to all the regular cold germs. I guess the fact that we both have raw hands from frequent washings is not for nothing. This process will make you into a paranoid, obsessive germophobe (sorry Puddy)!

I hope everyone enjoyed the holidays and is settling into 2006! Peace, Cari

Wednesday, December 28, 2005 5:00 PM EST

Jessie's clinic appointment today went well. They are continuing to wean her CellCept-- in two weeks, it should be gone! They are also slowly reducing her steroid dose, but they don't want to wean both drugs aggressively at the same time. In her blood work, her "LDH" level was high. We don't know what "LDH" is, except that it has something to do with liver function. The high reading is most likely a side effect from the steroids, and they aren't too concerned about it. To be safe, though, they're going to run some extra tests next week to check Jessie's liver function.

We had a wonderful Christmas! Jessie got to see several of her good buddies-- Rob, Heather, Sara and Ron all stopped by over the course of the weekend. Christmas Day itself was unexpectedly quiet-- my parents had to cancel at last minute because my Mom had a cold. So Jessie still has Christmas presents to open, though she doesn't know it.

Dylan rolled over for the first time on Christmas Day. It was quite a coincidence-- Jessie rolled over for the first time on Christmas Day three years ago, and she was wearing the same outfit Dylan wore on Sunday. (Yes, some of Dylan's hand-me-down outfits are a bit feminine.) He hasn't rolled over since, so we think it may have been a fluke.

We don't usually say grace before meals, but we were moved on Sunday to pray for all the families we've met who suffered unimaginable losses this year. I hope you'll pray for them too. Don't get me wrong-- this has been a brutal year, and we can't wait to turn the page-- but we never forget that we're the lucky ones.

God bless you.

Matt

Saturday, December 24, 2005 8:28 PM (6 month anniversary)

Jessie is 6 months post-transplant today. In some ways, it feels like just yesterday we were celebrating the arrival of the new cells. In other ways, it feels like Jessie has been dealing with the recovery for years. In any event, a lot has happened in the last 6 months.

This year we will be celebrating the hope that has been given to us by a baby that donated her umbilical cord blood to Jessie. The hope for a better life for Jessie. The hope that her younger brother will grow up getting to know his big sister. This Christmas is filled with hope for the future.

We are so happy to be HOME together for Christmas. We know that there are many families celebrating Christmas on 5200 this year or in other hospitals around the world. We know that there are families that are grieving the loss of their child this year. We keep these families in our prayers and hope that they may find some peace this Christmas.

Merry Christmas from the Aufmans. We are thankful for the support we have recieved from you this year.

Wednesday, December 21, 2005 8:30 PM EST

Jessie had another good clinic visit today. Her rash is virtually gone, and her blood work is excellent. They are continuing to wean her CellCept (immune suppressant) and have also begun to reduce her steroid dose. It will be a while, though, before Jessie's steroid dose comes down enough to help her mood. So we enjoy her good times, and we try to be compassionate (and patient!) during her not-so-good times.

We're looking forward to a low-key Christmas at home. It's nice to be together as a family.

Our friend Bobby had his bone marrow transplant yesterday. Please keep him and his family in your prayers.

Thanks for your love, support and prayers. Merry Christmas and Happy Chanukkah!

Matt

Sunday, December 18, 2005 9:20 PM EST

The past few days, Jessie has been practicing her walking. She stands by the TV, waits for us to pay attention, then lets go and walks across the room to the beanbag chair. It's not far-- perhaps five feet-- but the only time she walked without support previously was when her physical therapist was prodding her. We don't know why Jessie has gotten so adventurous (by her standards) lately, but we enjoy watching her doing something new-- it sure beats fretting over things she used to do before transplant, but doesn't do anymore.

The steroids are making Jessie cranky. Fortunately, she's not miserable all the time, but when she's going through one of her bad spells, she's a bear. We want to be consistent with our discipline, but we also understand she's not in full control of her actions sometimes. It's a tricky balance.

Dylan is doing well. It amazes me that he's already trying to communicate with us! He spends most of his waking time calmly taking in his surroundings-- Mom, Dad, Jessie, and our three dogs. Strangely, he likes it when the dogs lick him on the face. (Astra does this all the time.)

It has been wonderful to receive so many Christmas cards from people we haven't seen in a while. With everything that's happened, we haven't stayed in touch with friends and family as well as we'd like, and it's nice to reconnect, even in a small way.

Thanks for continuing to pray for Jessie.

Matt

Thursday, December 15, 2005 7:05 AM EST

Jessie and Dylan both had doctor's appointments yesterday.

They are keeping Jessie's steroid dose steady for at least one more week, but they have begun to wean her primary immune-suppressant drug (CellCept). The goal is to have Jessie completely off the CellCept in four weeks. The folks at Dana Farber think this is more important than weaning the steroids.

Dylan's appointment went well. He is gaining weight and doing fine. Like all kids, he hates getting shots-- he got three yesterday. He screamed for the rest of the doctor's visit, then fell asleep in the car and didn't wake up for several hours.

We hope all of you are staying warm-- it has been bitterly cold in New England the past couple of days! Thanks for checking in, and we are grateful for your continuing prayers.

Peace,
Matt and Cari

Saturday, December 10, 2005 4:15 PM EST

Jessie's rash looks much better. The steroids are affecting her mood, though. It's fine on days when she's happy (like today)-- if anything, she's even more silly than usual! Unfortunately, on days when she's miserable (like yesterday), she's unbearable.

We got a foot of snow yesterday. Our neighbor cleared our driveway with his snowblower, saving us a couple hours of shoveling time. Thanks Roy!!

With snow covering the ground and shoppers clogging the streets (we live two miles from one of the biggest shopping districts in the Boston area), being stuck at home doesn't seem so bad today. Our thoughts turn often to friends who are spending Christmas far from home. This includes some friends from Duke, and also an 18 year-old from our church who will undergo a bone marrow transplant the week before Christmas. His name is Bobby; please pray for him and his family.

Have a wonderful weekend.

Matt

Wednesday, December 7, 2005 9:37 PM EST (day +166)

"O Christmas Tree, O Christmas Tree
You were made in China."

OK, we don't like the plastic tree-- but given our choices (fake tree or no tree), we made the right choice. More importantly, Jessie likes the tree a lot. Even Dylan is intrigued by the lights.

Jessie had her usual clinic visit today. She loves the guy who takes her blood pressure-- his name is Keith. Today, Jessie was so excited to see him that she bounced up and down and screamed!

Jessie had a skin biopsy last week. She tolerated the procedure amazingly well-- the dermatologists were surprised! We got the results today. As we suspected, Jessie's rash is due to GVH, but they also think eczema (dry skin) is a factor. Based on these results, Jessie's doctor decided to treat the GVH much more aggressively. Jessie's steroid dose has been increased more than threefold; the goal is to "capture" the rash quickly, then begin weaning the steroid along with Jessie's other immune-suppressant medications. In the short run, the steroids will further suppress Jessie's immune system and make her irritable, but we agree with the doctor that this is the right course of action.

We spoke today to a man whose 2-year old son was diagnosed with Sanfilippo Syndrome a week ago. It was a stark reminder of how much our life has changed over the past nine months. We're just beginning to grasp how radically our concept of "normal" life has changed. Eventually, we will mourn what we've already lost, but having seen so many parents lose their precious children in the past several months, our main emotion is gratitude for Jessie's progress so far.

It's hard to believe, but we're already planning our return visit to Duke next month for Jessie's 6-month post-transplant tests. The drive down and back will be grueling, and some of the testing will be unpleasant, but it will be nice to see a lot of people who we've missed since we returned home.

Thanks for continuing to check in and pray for Jessie.

Peace,
Matt and Cari

Thursday, December 1, 2005

NEW PICS added on 12/4/05!

Our morning routine of Disney shows continues. I can sing the theme songs to Wiggles, Higglytown Heros, Koala Brothers and Doodlebops in my sleep! At least Jessie has branched out a bit now...pre-transplant, she was a strictly Wiggles girl! I don't know what we would do without the TV to keep her amused during the day. She is less bored now that we are here at home but she still has periods of boredom. I know she longs to play with other kids!

Our clinic visit went well yesterday. It was finally decided that Jessie would have to have a biopsy of her rash to conclusively diagnose Graft v Host disease. Her rash does not look like the typical GVH rash but everyone is almost sure that is what it is. If it is not GVH, then Jessie can be taken off her immunosuppressant much quicker, so it makes sense to make sure that is what we are dealing with. Also, if it is GVH, then it should be dealt with more aggressively because active GVH is not good for her immune system. I hate to put her through a biopsy but it makes sense.

Other than that, Jessie is doing very well. She is completely free from IV infusions, which makes weekly clinic visits much shorter! Her numbers have been so good since we got home that they decided to change her IV pneumonia med to an oral antibiotic. Of course, Jessie has decided this is by far the worst tasting med of all time. She only gets it 3 times a week, but she has decided to spit it out unless I hold her down and force her to swallow. This does not start the day off on the right foot! It is remarkable that Jessie hasn't just decided to spit out all of her meds unless I force her to swallow, but she hasn't! Personally, I don't think the antibiotic is that bad. It is cherry flavored and not chalky like amoxicillin- who knows why she hates it so.

We finally got all the paperwork in order and Jessie's therapies (physical, speech and occupational) will start next week. I think this will help with her boredom! We are lucky that we live in a very good school district and they have been very responsive to our special needs. It will be nice when Jessie can go to pre-school with other kids her age--hopefully next fall!

Dylan is doing well. It is amazing to see how he tries to interact with his sister. He loves to watch her and she loves to watch him too. She still calls him "baby" but we are trying to get her to call him Dylan or just plain "D". He has developed a bit of a diaper rash and it brings back nightmares of Jessie's diaper rash ordeal. Hopefully none of my children will ever need morphine for a diaper rash again!

I can't believe it is December 1st already! I hope everyone is enjoying the holiday season! Peace, Cari

Saturday, November 26, 2005 5:30 PM EST

We had a nice Thanksgiving. My parents and Cari's brother joined us. Jessie was quite the entertainer! At dinner, she ate four helpings of turkey. I thought we'd regret feeding her so much, but she was no worse for wear.

My parents hadn't seen Jessie since we left Durham. My Mom said Jessie has much more color and energy now than she did then. That was good to hear; sometimes we forget that Jessie is making progress, day by day.

Jessie's rash is fickle. Today, it looks quite a bit better, but I won't be surprised if it looks as bad as ever tomorrow. It's frustrating-- they can't wean Jessie's steroids and other antirejection and immune suppressant drugs until the rash goes away, and they can't wean Jessie's other drugs (blood pressure, antiviral, antifungal) until she's weaned from the antirejection and immune suppressant drugs. It feels like we are in a holding pattern. We'd feel better if they could cut back on the drugs that weaken Jessie's immune system before cold and flu season begins, but that's not going to happen.

We have to limit visitors for Jessie's health-- which is a shame, because she's such a social kid-- but a few friends have been coming over to help Cari. Our friend Ingrid is especially talented. She can hold Dylan and play with Jessie at the same time, which frees up Cari to do work around the house. (I wish Cari would use the free time to rest, but that's not her nature.)

As we count our blessings this weekend, our thoughts are with the parents we met at Duke who lost children, and are dealing with profound loss in this season of joy. Please pray for them.

Thanks for your love and support, and especially for your prayers. We appreciate them more than you know.

Matt

Thursday, November 24, 2005 8:30 AM EST (day +153)

I wrote a lengthy update, but the computer ate it. I have neither the time nor the desire to recreate it right now, but I want to let everyone know Jessie still is doing well. Her clinic appointment yesterday was uneventful-- her rash looks a little worse, but they decided to give her topical treatments one more week to work before they increase her oral steroid dose.

The rest of the family also is doing well. Cari no longer needs her "wound vac" and feels much better.

Happy Thanksgiving! I'll write more later.

Matt

Thursday, November 17, 2005

We are continuing to adjust to being home. The days seem to fly by and I am left feeling that there are just not enough hours in the day! Jessie is doing well and very happy to be home. She had a very good clinic visit yesterday. She had a repeat ECHO to monitor the fluid that has been surrounding her heart post-transplant. This happens to a lot of transplant kids and is not something that becomes worrisome unless it does not resolve itself in the months following transplant. Yesterday's exam showed that the fluid is starting to decrease. This is great news! Jessie's numbers were also very good-- she set another personal record with platelets at 260!! The only issue is Jessie's persistent rash on her arms and legs. The rash is not bad and only appears in blotches here and there. It does not look like the typical GVH rash but I am convinced that is what it is. We are keeping it under control and watching it for any changes. We are trying a new ointment to see if that will help resolve it once and for all. If it gets any worse, Jessie's oral steroid will probably need to be increased and we would like to avoid that if it is possible!

Dylan is doing great. He is starting to smile but they seem to be reserved for Mom right now (although Dad gets an occasional grin). I am trying to remember to relax and enjoy these "baby" moments because I know they do not last long! He had a check-up yesterday and despite not being the best nurser, he is continuing to pack on the pounds. It was so nice to be in our old pediatrician's office for a regular check-up-- it almost felt normal. Our pediatrician has been great through this entire process with Jessie-- he has been a big support!

We had a special treat last night when Uncle Rob came over for dinner! Jessie was even more excited than usual to see him. She climbed all over him the entire evening! We are lucky to have him close by!

I was able to go to church on Sunday for the first time since May! It was so nice to be there and to see all our friends that continue to offer us their support. Their thoughts and prayers have helped us all through the months in Durham.

We continue to be thankful for our good fortune and small blessings that may have been overlooked during such a difficult time. We know that a lot of families have not been as lucky and we keep them in our prayers. Peace, Cari

Thursday, November 10, 2005 9:35 AM

Yesterday was Jessie's first visit with her new doctor, Dr. Lehmann, at Dana Farber in Boston. I thought it went remarkably well. They do things a bit differently here but I think we will be able to adjust to the changes without any difficulty! We had a scheduled appointment and an isolation room was ready for us when we arrived--no waiting rooms! A nurse drew Jessie's blood for labs and then the PA came in to examine Jessie and talk to me. Jessie watched the Wiggles the entire time.

Dr. Lehmann was not concerned about Jessie's little bit of a rash. She said that in her experience, kids with cord blood transplants sometimes have a tough time shaking the GVH rash and that they need a small dose of oral steroids to keep in under control for several months. She does not feel that it is anything to be concerned with. She may just ween the immunosuppressant drug before the steroid. She felt Jessie was on a very small dose of steroids and that most kids actually need a little bit more to battle the rash. This was all good news. I felt very confident in Dr. Lehmann's assessment and the treatment Jessie got at our new clinic. Jessie's numbers were also great yesterday-- she hit a new record with her platelet level reaching 225!

Things are incredibly busy here at home. With Jessie, Dylan and the three dogs, it is a madhouse! I am continuing to have a nurse come to change my special dressing 3 times a week--I will be glad when that is over! We are all glad to be home and are slowly unpacking all the stuff we brought home from NC. It has been a special treat to have Meredith here this week to help out! I think I may have had a break-down if I was on my own this week!

Thanks to everyone who has followed us through this process! We appreciate all the prayers that have been said for Jessie and the other friends we met while in NC! Peace, Cari

Monday, November 7, 2005 10:10 PM EST

Jessie is adjusting to life at home. We expected she'd remember the place, but we're surprised how many details she remembers-- little things like the beanbag chair, the shelf where we keep her books, and the slide in the backyard (which we need to hide, because it's way too dirty).

Jessie's rash looks a little worse today. We aren't nervous enough to call Jessie's doctor at Dana Farber, but we're concerned. Please pray that it's no big deal-- we have been battling this chronic GVH for so long!!

Our friend Meredith is coming tomorrow to spend a few days with us. (Meredith is Cari's childhood friend; her Mom and Cari's Mom were best friends.) We can't wait to see Meredith!! It seems impossible that it's been two years since we've seen her. When Jessie was little, Meredith was one of her favorite people. I'm sure they'll reconnect in no time!

Today was my first day back in the office. My co-workers threw a little surprise party and presented me with a quilt they made for Jessie. It's beautiful! They knew Jessie was a dog-lover, so there are lots of doggie cartoons on the quilt. Thanks guys!

Cari and I are happy to be home. Being home restores some normalcy to our lives, but it also reminds us that life won't ever be "normal" again. Jessie has been blessed with the best possible medical care, but we still wish she didn't face such a difficult and uncertain future.

Thanks for continuing to follow Jessie's progress, and for your prayers.

Matt

Saturday, November 5, 2005 2:10 PM EST (homecoming day)

It's Jessie's homecoming day! Today has been a long time in coming-- it has been 134 days since Jessie's transplant, and exactly 100 days since she was discharged from the transplant unit.

We got home just before 5:30 this morning. Aside from sleep deprivation, the trip went smoothly. Jessie was perfectly behaved until the final hour of the trip, and Dylan was as low-maintenance as a one-month old baby can be.

Lindsay and Frazier did an AMAZING job cleaning our house!! I feel like we won an Extreme Home Makeover. This is probably the nicest thing anyone has ever done for me. Thanks guys!

Rob and Heather came over for lunch and brought the dogs home. Jessie was so happy to see her little buddies!! They are happy to see her too-- especially Astra. Also, Astra has instantly bonded with Dylan; her new mission in life is to protect him, just as she protected Jessie when she was a newborn.

Today is a great day for me, but it has been an even more amazing day for Cari, who hasn't been home since Memorial Day! I'm sure we'll share some reflections once we catch up on some sleep.

Thanks for your continuing support and prayers. We couldn't have made it this far without you!

Matt

Wednesday, November 2, 2005 10:15 PM EST (Day 131)

Well, it's official-- we are coming home on Friday!! We had a short visit at clinic today. Jessie didn't need any IV meds, so we just stopped by late in the afternoon to meet with Doctor Paul. Her numbers look great and her rash is still under control. We also finally got her FK level down to a reasonable level. Her dose has been reduced twice and that seems to have done the trick.

It was hard to say good-bye to Doctor Paul. There's only two bad things about going home-- the weather, and the fact that a different doctor will be directing Jessie's care. We have a tremendous amount of confidence in Doctor Paul. He obviously cares about his patients, and Jessie loves him!

We'll also miss Gil and Jerelyn, who have been Jessie's two primary nurse practitioners in the clinic. When we called the clinic with a question or concern, we usually spoke to one of them, and on Jessie's clinic days, we spent more time with them than anyone else. They have been so good to Jessie and to us-- always going the extra mile! We're glad we got to say good-bye to both of them today.

Cheryl and Kelly came over tonight to celebrate with us. (Like Cheryl, Kelly is a nurse on the transplant unit; I know we've mentioned her, but it was a while ago.) Jessie was acting tired before they came, but she was a live wire the whole time they were here! She was so excited to see both of them, and she had a great time!

Cheryl and Kelly brought pizza from our favorite place down here-- lots of it! The leftovers will keep us fed until we leave. It's a little thing, but it will make a big difference for us the next couple of days. Thanks guys!

On a serious note, we're happy to report that Frankie seems to be back on track, but Kate continues to struggle and is back in the hospital. Please pray for her.

We're profoundly thankful for Jessie's good health and continuing progress. Our journey is far from over, but going home is a huge milestone-- probably the biggest so far. Thanks to all of you for your continuing support and prayers.

The next few days will be frantic, but we'll definitely post another journal entry when we get home, if not sooner.

Peace,
Cari and Matt

Monday, October 31, 2005 7:10 PM EST

Happy Halloween! Cari and Jessie went for a walk this evening. They saw lots of Halloween decorations, but only one trick-or-treater. Cari and I look forward to handing out Halloween candy, but this year we're keeping our light off so Jessie won't be exposed unnecessarily to germs.

Jessie's FK level is still high. They told us to withhold her evening dose tonight and to give a lower dose going forward. We hope this solves the problem. If not, Doctor Paul said this wouldn't keep us in Durham-- his main concern is Jessie's GVH rash. So far, the meds are keeping the rash in check, even with last week's reduction of Jessie's steroid dose.

We decided today that we have to start making plans to go home. We've been putting this off, but it's reached the point where we need to get to work so we're ready to go when Jessie is. We will drive home in a rented van. My parents are flying down on Friday and will drive our car home. I told them to buy refundable tickets-- no sense jinxing anything!

We're running out of groceries, so our meals are getting increasingly creative. For dinner tonight, we're having scrambled eggs and rice wrapped in tortillas. By the end of the week, we'll be living on breakfast cereal and take-out! Jessie mostly eats fast food and TV dinners, so she's unaffected.

We've gotten lots of feedback about the photo of Jessie hugging Dylan. I got my first camera when I was about six years old; twenty-five years later, I've finally taken my first great picture! Actually, I have to share credit with Cari, who did a great job cropping the original to get the close-up you see on the site. I love the picture because it captures the love that Jessie has for her baby brother-- not a day goes by where she doesn't hug, kiss, or snuggle with him!

The furniture store sent a crew to our house on Saturday to pick up the tainted chair. Thanks to Cari's brother Rob for going to our house early Saturday morning to let them in!

I'd like to ask you to pray for two children from the transplant unit. Frankie is a 2-year old boy from Connecticut who has the same genetic disorder as Jessie. He had his transplant about a week after Jessie. We've heard he has been throwing up frequently, for no apparent reason. Please pray it's nothing serious. Please pray also for Kate, a 3-year old with a different genetic disease who also had a transplant at about the same time as Jessie. She has been sick and is fighting a viral infection.

Sorry for another disjointed journal entry. We hope you are all doing well, and we hope to see many of you very soon!

Matt

Friday, October 28, 2005 8:20 PM EDT

Jessie's FK level was high on Wednesday, so we re-tested it today. (FK is Jessie's primary anti-rejection drug.) Her level was even higher today, so we are skipping Jessie's dose tonight and will re-test again tomorrow morning. The high FK level isn't good for Jessie's body, so we want to bring it down quickly.

We met last night for 90 minutes with Doctor Paul and Gil (one of the nurse practitioners). We agreed tentatively to travel home next Friday-- a week from today! Unfortunately, they want Jessie to have a few more tests before she goes, in addition to her usual Wednesday clinic visit. Next week will be extremely busy.

While they were cleaning our house, Lindsay and Frazier discovered mold on the purple armchair in our living room. It's one of the few nice pieces of furniture we own, and we bought it just a year and a half ago. The "customer service" guy at the furniture store (In-Home Furnishings) wasn't sympathetic, but he did grudgingly agree to send a crew tomorrow morning to pick up the chair so he can look at it. It sounds like the mold grew from the inside out, so I don't want the thing back in our house.

It was 42 degrees outside when I went out this morning to pick up coffee and drop Jessie's blood off at the lab. It felt like the middle of winter! I miss a lot of things about home, but the cold weather isn't one of them.

Cari and I got flu shots this week at a local supermarket. If you're planning to visit us this winter, please make sure you get a flu shot!

Thanks for your support and prayers.

Matt

Wednesday, October 26, 2005 4:37 PM (day 124)

With cautious optimism, we are starting to plan the trip home! Jessie's doctor gave us the green light to return home late next week! Now begins the small task of getting everything we have accumulated while in NC back to Boston (including but not limited to a baby boy)!

Jessie's clinic visit went well today. Her numbers all rebounded after dropping slightly over the past couple of weeks. The doctor reduced the dose on Jessie's steroid and blood pressure meds. He also discontinued her weekly IVIG dose (which she receives by IV at clinic); she now will receive IVIG only as needed, based on her immunoglobulin levels.

Once we return home, Jessie will see a doctor at Dana Farber in Boston once a week. We are very lucky to live near a world class cancer center! Now I just need to coordinate my own wound care for home and we'll be all set on the medical side. (I will need a visiting nurse 3 days a week until the wound heals, which I am told will take at least a month.)

We are excited to have reached this stage in the transplant process! Things have gone well for us, but it is still hard to be away from home for so long. Even our DVD player exhibited its discontent by biting the dust yesterday. Those of you who know Jessie understand what a hardship this is for her!

Thank you to Lindsay and Frazier for cleaning our house--looking out for anything that could threaten Jessie's fragile immune system (i.e., mold & mildew)! Also, thanks to everyone who has sent Dylan a cute little outfit (or gift card). This more than made up for the fact that getting Jessie's baby clothes out of storage and down to NC just did not happen!

Thank you for the prayers and good thoughts! We have appreciated all the support we have received over the last 5 months! We look forward to being home and re-establishing some degree of normalcy! Take care- Cari

Saturday, October 22, 2005 9:45 PM EDT

Cari posted new pictures!

Jessie has reached a point that every parent dreads-- she is giving up her nap. In the last five days, she has only taken one real nap, and she stayed up to 11:00 that night.

It's wonderful to see how deeply Jessie cares about her baby brother! Dylan cries when we change his diaper, so Jessie will crawl across the apartment to our bedroom (where Dylan's changing table is), pull herself up on the side of the table, and watch us change him. She is still not happy when Dylan cries, but she's starting to understand that babies cry a lot, and that it's not always a big deal.

Cari is doing OK. Her recovery will take several weeks. In the meantime, she'll be in a lot of pain. It won't surprise you to hear that Cari is handling this extremely well.

Cari and I are big sushi fans, so we treated ourselves to good take-out sushi today. (Believe it or not, you can get good sushi here.) Cari didn't eat raw fish during her pregnancy, so it was her first sushi in almost a year.

Thanks for continuing to pray for Jessie.

Matt

Wednesday, October 19, 2005 8:00 PM EDT

Jessie had a busy day. She had minor surgery this morning to remove one of her two central lines. After that, we went to clinic for her usual Wednesday appointment. The surgery went smoothly, and Doctor Paul is pleased with Jessie's progress. He switched her from IV steroids to oral steroids and reduced the dose by about 25 percent. We will see how Jessie handles this change; if her GVH doesn't re-emerge, we may start making homecoming plans in a week or so.

Cari had another nurse's visit today. The nurse hooked Cari up to a "wound vac," which is a medical device that constantly drains fluid from behind her incision to prevent infection. She'll need to tote this device around for a few weeks-- not fun.

My parents went home this morning, so for the first time in over two weeks, it's just the four of us in our apartment. Jessie misses having company-- she finds Cari and me a little boring.

We are grateful for your continuing prayers for our family.

Matt

Monday, October 17, 2005 4:30 PM EDT

Cari has had a rough day. She went to her doctor's appointment at noon. The receptionist said her appointment wasn't until NEXT Monday. Fortunately, Cari insisted that she needed to see a doctor, so they squeezed her in.

The doctor examined Cari and told her that he needed to reopen her incision. He was ready to send her to surgery, which would have meant a 2-day hospital stay. Cari asked if anything else could be done. The doctor said he could open the incision in the office, but it would be excruciatingly painful-- all he could offer to dull the pain was a few shots of novocaine. Those of you who know Cari can guess what happened next: they opened her incision with a scalpel and cleaned out all the tissue, fluid and pus that had accumulated inside her-- without the benefit of anesthesia. The doctors were amazed she was able to tolerate the pain. They said she would have been in bad shape had she waited a day or two (let alone a week!) to see a doctor. As it is, we need to watch Cari closely to make sure she doesn't develop an infection, but otherwise her condition probably isn't that serious-- just painful. Cari will continue to have a daily visit from a nurse until she heals.

Jessie is doing well. She is very affectionate today-- I have gotten lots of hugs and kisses! She will have fun playing with my parents, who arrived today for a 2-day visit.

Jessie's quilt from our friends at NHCC arrived today. It's beautiful!! Thanks to everyone who took part in making us such a wonderful gift. We hope to see you all again soon.

We are grateful for your continued prayers for our family.

Matt

Sunday, October 16, 2005 12:40 PM EDT

Ron left early this morning after a three-day visit. We hadn't seen him since Christmas, so it was good to catch up. Ron and Jessie have a special bond-- she only sees Ron two or three times a year, but each time they reconnect in a matter of minutes. She loves him so much!

We've had a quiet weekend (so far), but Friday was chaotic. The clinic called at 11:00 or so and said Jessie's RBC count was low enough to require a transfusion. That was bad enough, but they said her WBC and platelet counts also had fallen. This across-the-board drop suggested a resurgence of GVH-- which surprised and greatly concerned us, because Jessie had no rash.

Meanwhile, Cari had noticed some bleeding from her incision and had called the OB clinic; they said they could squeeze her in at 1:00 (which isn't something they normally do). Because we can't fit three adults in our car with both child seats, we pressed Ron into service as a chauffeur. First, he drove Jessie and me to the hospital, then he drove back to the apartment, picked up Cari and Dylan, and drove them to the OB clinic (about two blocks from the hospital).

No sooner had Ron parked the car than he got a call from me. Jessie's counts were perfectly normal on the retest, so the whole thing was a false alarm (and we were free to go). There must have been a problem with our blood draw that morning. I did the draw, so perhaps we should have known. So Jessie missed her nap, but otherwise was no worse for wear.

Cari's situation is somewhat more serious. We have a nurse who comes to the apartment every day now to change Cari's dressing. When the nurse has come the past two days, Jessie has been stunned-- she can't believe a nurse comes to our apartment and doesn't touch her!

Best wishes to my cousin Nora, who got married yesterday! I'm sad that I couldn't be there, but I'm even more sad that Jessie missed it-- she would have had a blast.

Thanks for your prayers for our family.

Matt

Thursday, October 13, 2005 10:47 PM

It has been so nice to be together as a family this week! I cannot say how lucky I feel to have both my children, Jessie and Dylan, together at our apartment. Jessie is doing great. She had her doctor day at clinic yesterday (I did not attend for the 2nd week in a row), and some of her meds were reduced, including the steroid which is scheduled to be dicontinued next Wednesday if all continues to go well. Her rash has not reappeared and we are vigilantly watching for any signs. Her central line removal is also rescheduled for next Wednesday-- she will still have one central line left in for IV infusions and blood draws.

Aunt Heather was here for a few days and she completely spoiled all of us! She cooked gourmet meals for Matt and me, held Dylan every waking (and sleeping) moment, and played with Jessie. We are so glad she was able to make it on such short notice! Our friend, Ron, arrived today and Jessie has enjoyed getting reacquainted with him. She got to stay up late tonight because she was playing ball with Ron and we couldn't put her to bed while she was having so much fun!

It was a beautiful day today with sun and warm weather but I am aware that fall is even starting to emerge here in Durham, NC. I know back home fall is in full color by now! Although I am really starting to feel homesick, I still know that we are so blessed to be here getting treatment for Jessie and to be together again as a family. I am constantly aware that there are families here that are not as lucky as we have been and my heart goes out to them. I know Matt has said it before, but this experience has forever changed us.

Thank you all for the support you have provided- we could not continue this journey alone. Peace, Cari

Tuesday, October 11, 2005 3:10 PM EDT (day +109)

Jessie had a great day yesterday, but today she is cranky. We're all entitled to a bad day every now and then; Jessie, especially, is entitled. We just hope this isn't a sign she is getting sick. Jessie threw up on Sunday afternoon, and although we think she just ate too much rich food, we have watched her a little more closely (and anxiously) the past couple of days.

The steroids are stomping out Jessie's GVH. Her rash is gone. Please pray that it doesn't re-emerge when they reduce Jessie's steroid dose tomorrow! Jessie's blood work yesterday was encouraging-- since last week, her WBC and platelet counts have stabilized, and her RBC count has increased a bit.

As I write this, Jessie is having her physical therapy session. Her therapist's name is Jamie. Jessie adores Jamie! Unfortunately, Jessie has absolutely no interest in physical therapy. Jamie is incredibly patient with Jessie. Some days, she actually gets Jessie to do exercises; on other days, they just play (which at least drags Jessie away from the TV for 45 minutes). It looks like today will fall into the second category.

Having Heather here is wonderful! She never tires of holding her new nephew. Jessie is very comfortable with her too. Heather is an amazing cook, so we're (still) eating extremely well. It's a small thing, but it makes a huge difference.

Cari had a follow-up appointment at the OB clinic today. Cari chose the clinic because it is close to the hospital, which was crucial during Jessie's hospitalization. We think most of the clinic's patients are either uninsured or on Medicaid. Today, Cari saw a doctor who never had seen her before. This is the seventh different doctor who has seen Cari at the clinic. The doctor seemed rushed. Cari's pregnancy and postpartum recovery have been blessedly unremarkable, but it has been eye-opening for us to see the quality of care that poor people routinely receive. The fact that Jessie has received such superb care makes the difference all the more noticeable.

We are grateful for your support. Please continue to pray for Jessie.

Matt

Sunday, October 9, 2005 2:45 PM EDT (day +107)

Dylan came home yesterday afternoon. Jessie was thrilled to meet her baby brother! She quickly realized she wasn't allowed to drag Dylan around like one of her toys, and since then she has been very gentle and sweet! She gets concerned when Dylan cries. Cari and I tell her it's OK and that babies cry all the time, but Jessie doesn't understand.

Lindsay and Frazier left yesterday, shortly after the homecoming. All of us will miss them-- especially Jessie. Cari and I were concerned how Jessie would react to her Mom's absence, but she actually had fun this week! Lindsay and Frazier love Jessie very much and showered her with attention. In addition to caring for Jessie all week, Lindsay and Frazier are also cleaning our house so it's ready for our BIG homecoming. We don't know what we would do without them-- thanks guys!!

Jessie will also miss Lindsay's cooking. Every morning, Lindsay made Jessie four eggs and two slices of toast, and Jessie ate every last morsel. (Usually, she throws a few pieces overboard; this is a bad habit we tolerated for a long time because our dogs gobbled up whatever hit the ground.) After a few days of this, I finally asked Lindsay what her secret was. Turns out, after Lindsay flipped the eggs, she would melt a few thin slices of butter on top of them. Poor Jessie will now have to become re-accustomed to her parents' mediocre cooking.

Fortunately for Jessie, she won't be stuck with just boring old Mom and Dad (and Dylan, who's not so boring) for long-- her Aunt Heather is flying down tonight to spend a few days with us!

Jessie's GVH rash has all but disappeared. The increased steroid dose definitely did the trick. They'll probably reduce her dose to 5 mL again on Wednesday and see what happens.

Another medical tidbit I forgot to mention: at her doctor's appointment on Wednesday, Jessie had gained two pounds since her appointment a week earlier! This means she is back to her pre-transplant weight (about 45 pounds). She has grown a few inches in the meantime, so she's not as chubby (yet) as she was when we first came to Duke.

We'll post pictures of the homecoming later today. You'll notice that Jessie's face is bloated-- this is a temporary side effect from the steroids.

Thanks for your prayers for Jessie. We are extraordinarily blessed to be together as a family today.

Matt

Friday, October 7, 2005 6:00 PM EDT (day +105)

Jessie has had a bit of a setback. Her GVH rash re-emerged yesterday, and her blood work this morning showed that her RBC and platelet counts have dropped (though they remain within normal limits). In response, Doctor Paul has increased her twice-daily steroid dose from 5 mL to 8 mL, starting with tonight's dose. Prior to her clinic appointment on Wednesday, Jessie's dose was 10 mL twice daily, so this isn't a drastic change.

We are applying two anti-rejection creams to Jessie's skin three times a day, as we have been for a few weeks now. She hates this. After handling this unpleasant job myself for the past several days, I have an even deeper appreciation for what a great job Cari has done with Jessie's care. She's an amazing person.

Speaking of Cari, she and Dylan were supposed to come home today, but that has been postponed for a day. The doctors discovered yesterday that Dylan's blood cultures were contaminated, so they had to draw new ones. So, we need to wait until 48 hours after the second set of cultures were drawn to see if any bacteria grow. Dylan seems to be doing great, and he was on antibiotics for over 24 hours by the time they drew those cultures. Therefore, the pediatrician thinks it's unlikely that the cultures will show any infection. If he's right, Cari and Dylan will come home tomorrow afternoon. Jessie will be so ecstatic to see her Mom, it may take a few hours for her to realize she has a baby brother!

I spoke with Ken (our pastor) this morning. Many of you have supported us these past several months, so I'm reluctant to single out anyone. That said, I'm absolutely blown away by how kind and generous the people from our church have been to us. Our family is blessed that God led us to NHCC!

One random note: because of Jessie's condition, we aren't allowed to have fresh flowers in the apartment. Someone sent us flowers to celebrate Dylan's birth, and I had to refuse delivery. So please don't send flowers-- and if you did, make sure you get your money back!

Thanks to everyone for your prayers, support and well-wishes!

Matt

Wednesday, October 5, 2005 6:45 PM EDT (day 103)

Jessie had a good day at clinic today. Doctor Paul is pleased how well her rash is clearing up, and he reduced her steroid dose again. Unfortunately, he doesn't think Jessie will be ready to go home in two weeks, as we had hoped. He thinks three to four weeks is more realistic.

We had a scare with Dylan this morning. Because his blood sugar was persistently low overnight, they did a test to check his blood counts. The numbers were off the charts low-- a sure sign of a serious infection, such as bacterial meningitis. They re-tested him, however, and the second set of results was normal. So basically, we had a two-hour scare, but everything seems to be OK. As a precaution, they drew blood cultures and started IV antibiotics (four times a day). If the cultures are negative after 48 hours, he should be ready to come home on Friday. Cari is recovering swiftly-- she'll be ready to go when Dylan is.

Lindsay and Frazier are doing a wonderful job taking care of Jessie! They're doing such a good job that when I get home from the hospital, Jessie isn't thrilled. I can understand-- from her perspective, it probably seems like my purpose in life is to change her diapers, give her meds, and apply prescription creams to her rash (which she especially hates). Lindsay is a professional chef and is keeping Jessie and me well-fed. Jessie's diet of frozen pizza, chicken nuggets, french fries, eggs and toast doesn't exactly stretch Lindsay's culinary skills, but I'm eating better than I have in months!

We learned a short while ago that A.J. passed away. Cari has written about A.J. before-- he was a patient on the transplant unit when Jessie was there. A.J. was a very social, sweet kid. His condition seemed to be improving slowly over the past week, so news of his death came as a bit of a shock. Please pray for his family.

Thanks for continuing to follow our family's progress! Jessie is blessed to have so many people who love her and are praying for her.

Matt

Tuesday, October 4, 2005 9:00 PM EDT (day 102)

NEW BABY PICTURES!

Dylan Robert Aufman was born today at 9:10 A.M., weighing 7 lbs. 12 oz. Dylan, Mom, and big sister Jessie all are doing well.

Our friends Lindsay and Frazier changed their flight plans and arrived here at about 10:00 last night. Jessie was thrilled to see them! I thought she'd fall asleep on the ride to and from the airport-- no way! She was so excited to see her buddies that she stayed up until 11:30, and she only went to bed then because the adults went to bed too. Jessie spent most of the day today with Lindsay and Frazier, and she had a wonderful time!

Doctor Paul said Jessie could visit Mom and Dylan in the hospital, but we're leaning against bringing her there. Obviously, Jessie would be happy (to put it mildly) to see her Mom, but the end of the visit would be traumatic. So long as Jessie is dealing OK with the separation (and Mom is too), we're inclined not to have a visit.

Because of the unexpectedly early birth, we cancelled the 100-day tests Jessie had scheduled for this week. Unfortunately, we won't be able to reschedule Jessie's orthopedic appointment-- they book far in advance, and we hope to return home in 2-3 weeks. (The orthopedic appointment was at 8:30 this morning, so it's not like we had a choice.) Jessie will either see an orthopedist in Boston or wait for her 6-month check-up early next year.

Thanks to everyone who sent best wishes and prayers today. Please continue to pray for Jessie-- for our sake and hers, but also for little Dylan, who deserves to grow up with his sweet, loving big sister.

Sunday, October 2, 2005 2:45 PM EDT (day +100)

Day 100 is a huge milestone! Jessie will be at risk for several more months-- and it will be years before we know the full effect of the transplant-- but Jessie has survived the most critical period! We thank God for Jessie's amazing progress to date and pray for her continuing recovery.

Also, at some point this weekend, this site received its 10,000th "hit." Jessie is blessed to have so many people who care about her. God bless you all! We are profoundly grateful for your support and prayers.

Our gratitude today is clouded by sorrow. Baby Emma, a one-year old cancer patient who was on the transplant unit with Jessie, passed away this morning. During Jessie's exercise time on the unit, she liked to stop at Emma's room and look at the "baby" pictures of Emma on the door. Please pray for Emma's family.

By my count, Emma is the seventh child who was on the unit with Jessie who has passed away. A bond forms among the families on the unit, even if you try to keep to yourself (as we did, for the most part). So even though we didn't know any of these children well, each death affects us personally. I don't know what the long-term effect on Cari and me will be, but we'll be changed forever. Thankfully, Jessie isn't old enough to understand.

Cari has been stuffy when she woke up the past two mornings. We're pretty sure it's pregnancy-related, but just to be safe, Cari has been wearing a mask when she's around Jessie. This freaked Jessie out a bit yesterday, but she seems to have gotten used to it. Driving my two masked girls to Wendy's today was humorous-- people probably thought we had SARS or something!

Enjoy the rest of your weekend.

Matt

Saturday, October 1, 2005 11:30 AM (Day 99)

It is hard to imagine that Jessie has almost made it to day 100 already! The last 2 months have flown by! She is doing well-- the rash has all but disappeared and she has maintained a therapeutic level of her FK506. We are still waiting for some of the 100 day study results to come back. Her enzyme level test will take about a week and her immune function tests were put off due to the steroids (Dr. Paul didn't want the results to look worse than they actually are). Everything else looks normal. It is amazing how well her body has dealt with the trauma of transplant!

Last night, Jessie's primary nurse, Cheryl, came over for dinner. Jessie was very glad to see her! She had Cheryl playing with her in minutes and enjoyed entertaining us with her silliness! It is amazing what a bond was developed while Jessie was inpatient-- not just for Jessie but for us too.

On Wednesday night, friends were visiting the area from my home town. I was able to get away for a bit and have dinner with them. It was good to get away and have some adult conversation! They have a 2 year-old son that Jessie would have loved to play with. She waved to him from the door and I could tell they would have had a great time playing together. I know Jessie misses her interactions with other kids. It is just another way in which she has lost a little bit of her childhood from this experience. No 3 year-old should have to take so many nasty medications or have to be confined to an apartment for months on end. Sometimes it makes me sad to think about what she is missing but, in the end, we hope that she will gain more than she has lost over the course of this treatment.

We are going to try to have a relaxing weekend because it could be our last chance to enjoy some quiet. We have a busy week next week and the baby will arrive next Friday, at the latest. I think we are almost ready for his arrival now-- we actually have a place for him to sleep!

Our little friend, AJ, is doing better. He is starting to slowly recover from the serious infection that endangered his life. He is such a strong fighter! Thank you to everyone that has said a prayer for him and his family. Thank you too for continuing to keep Jessie in your thoughts and prayers! I hope everyone has a relaxing weekend! Peace, Cari

Wednesday, September 28, 2005 2:15 PM EDT (day +96)

Jessie is doing well. Her rash is steadily getting better. We saw Doctor Paul today, and he reduced her daily steroid dose by one-third.

Jessie had a full range of blood tests today. Her numbers are excellent! Her RBC, WBC and platelet counts are all within the normal range, and her mineral levels have improved too. The doctors are very pleased.

Jessie's 100-day post-transplant tests are continuing. We got the MRI results, which show that Jessie's brain has deteriorated a bit since her scan just before the transplant. This is expected-- even leukemia patients typically suffer some deterioration in the first 100 days. The damage may repair itself to some extent over time.

Cari took Jessie to her developmental assessment yesterday. We haven't gotten detailed results yet, but the preliminary report is that Jessie has basically held steady-- gaining ground in some areas, and losing ground in others. Most kids take a step back during the transplant process, so this is great news! We're especially encouraged that the doctors thought Jessie had made a bit of cognitive process in the past few months-- we pray it's a sign of better things to come! It's a testament to the doctors' skill that they were able to complete the assessment at all-- Cari said that Jessie was incredibly stubborn, even by her lofty standards. She refused to answer questions or identify objects, and if we had a nickel for every time she said "no" during the four-hour session, we'd be rich.

Cari had an OB appointment on Monday. Everything seems fine. The doctor said Cari was unlikely to go into labor before her scheduled C-section date, which is a week from Friday. It's nice that everything will probably go according to plan, though I know Cari would prefer to give birth as soon as possible!

Everyone who will visit us this winter needs to get a flu shot. I just thought I'd get the word out early, so those of you who plan to visit can be on the lookout for free or low-cost flu shots this fall.

Cari's friends Chris and Dee are going to be in the area later today with their son. Unfortunately, they can't come to the apartment (because Jessie can't be around other kids), but Cari plans to meet up with them while they are here. Chris said they brought a grape pie for us-- yum!

Thanks for your continued support and prayers.

Matt

Friday, September 23, 2005 6:23 PM (Day +91)

I'm sorry I haven't updated in the last couple days. I have developed a painful case of carpal tunnel in my wrists (pregnancy related) and it really can be uncomfortable to type. I am so ready (physically) to have this baby!

Jessie is doing much better. On Wednesday, her FK506 level finally jumped up to a good therapeutic level and has remained there the last 2 days. Her magnesium level was also much better on Wednesday. Dr. Paul thinks that she was experiencing some GVH in her digestive system that was interfering with absorption. The IV steroids seem to have solved the problem and today we reduced her dose. She has only been on them since Monday, so it is clear she responded well to the small dose. It is a bit of mystery because Jessie did not exhibit other signs of digestive system GVH-- she continued to have a good appetite, did not experience diarrhea, and her numbers continued to improve. Sometimes it can be a bit of a puzzle! I'm glad we finally figured out what was going on. Her rash has improved significantly as well.

Jessie had her brain MRI today as part of her 100 day studies. Not having to get an IV for sedation improved the experience significantly (they used her central line). Afterward, Jessie screamed on and off for 1.5 hours while the sedation wore off-- she was not happy with us! She has settled down now and is content watching Wiggles and eating toast and eggs (she is one her 3rd piece of toast!). Her line removal is being rescheduled because she is now maintaining a therapeutic level on the oral dose of FK506. I'm glad we took the precaution of delaying the surgery.

Matt flew in this morning and is now here for the duration--I guess I can go into labor now! I am scheduled to have a c-section in 2 weeks, if I don't go into labor before then. Matt's mom left yesterday and we really appreciated her help this week!

As we have been dealing with Jessie's minor setback this week, I have found my mind going to AJ's family. AJ is a 4 year-old boy we met while inpatient. If you happened to be an inpatient with AJ, you couldn't help but get to know him. He is a very social, active boy with a great heart. He has been very sick this week with a life-threatening infection in his lungs. I can't imagine what his family is going through and my thoughts and prayers go out to them that they find the strength they need to deal with this frightening situation. Please say a special prayer for this special kid! Thanks for checking-in and hope everyone has a good weekend--Peace, Cari

Tuesday, September 20, 2005 8:54 PM

Just a quick update. Jessie's surgery for tomorrow to remove one of her central lines has been canceled. The decision was made because she has had such a problem keeping her levels of the anti-rejection drugs (Cyclosporine & FK506) within therapeutic range since she changed to oral. If this continues, she will have to go back to the IV dose, and if that happens, then she will need more than 1 line. Because of the consistency of these drugs (sticky), you can't administer the drug in the same line that you draw blood. There is no way we want to have to stick Jessie every time we need a blood sample, so leaving the line in until she maintains a good level seems like the best plan.

She is doing better today and the rash seems to be slowly diminishing. Hopefully, she will start to maintain a therapeutic level and the line can be removed in a week or so. Thanks for checking in- Peace, Cari

Monday, September 19, 2005 9:10 PM (Day +87)

Jessie's rash had started to look better a few days ago but then today by 10:30am I was thinking I should take her into clinic to have them take a look. It has spread down her arms and looked horrible on her legs. They decided to change her steroids to a stronger IV steroid. It seemed to help tonight, as she was not itching as bad as she was this morning. The downside is that it also makes her a bit agitated. She was so tired tonight from missing her nap today but could not settle down to fall asleep. I had to lay down with her and rub her back until she fell asleep even though she had been asking to go to bed since 7pm.

It turns out that her FK506 level had fallen again since Friday. Last Wednesday, it was almost at a therapeutic level. Then on Friday, it had fallen just a little bit. By today, it was back down to almost nothing. They increased the dose again tonight- she is now on enough FK506 for a sumo wrestler! I don't know if she is not absorbing it or metabolizing it too fast, but it must be going the same way as all the magnesium she gets (she had to get more IV mag while in clinic today). This, at least, explains the rash. Again, her numbers are continuing to go up, so they aren't too worried about serious GVH but it is still hard to see her so itchy.

Wednesday will be a busy day for us. Jessie is having the surgery to remove one of her central lines and then we will go to clinic. It should be a marathon of a day! Jessie sometimes gets sick to her stomach from anesthesia, so going to clinic after surgery could really be fun! I suppose they may be able to treat the upset stomach better in clinic than I could at home--let's hope.

I hope everyone had a good weekend! Thanks for checking in on Jessie- and thanks for the continued prayers for her fast recovery. Peace, Cari

Friday, September 16, 2005 9:50 PM EDT (day +84)

We went to clinic today. Jessie's magnesium was low, so she got an infusion. They also checked her rash, which appears to be improving very slowly. The doctor increased Jessie's dosage of CellCept (immune suppression drug). Jessie's dosage was reduced two weeks ago, and this change simply brought the dose back up to the old level. It's a small step in the wrong direction, but not a big deal in the grand scheme of things.

We talked to our friends Michael and Mary today. Michael is a 15 year-old who was on the transplant unit the same time as Jessie; Mary is Michael's mom. They told us when Michael gets a magnesium infusion, he usually has a bad headache that night. We're so grateful they mentioned this! Sure enough, Jessie was fussy off-and-on tonight-- sometimes suddenly, and for no apparent reason. She probably had a headache. So we gave her some Tylenol, and it seemed to help a little! Thanks guys!!

The rash makes Jessie's skin itchy. Also, she had a few momentary bouts of rage today; the steroids probably are causing these. (They aren't tantrums-- they are much more intense, but very short-lived.) In all, today wasn't a good day for Jessie, but a bad day now is better than a good day was six weeks ago.

Jessie's appetite is back with a vengeance. We now make two trips a day to the Wendy's drive-thru for chicken nuggets and french fries. She also eats a good breakfast (eggs, with toast and/or Cheerios) and usually puts away a whole kid-size frozen pizza at some point during the day. (We buy the cheap, store-brand pizza, which doesn't have enough cheese on it to upset Jessie's stomach.)

Every time I write one of these entries, I try to think of a new way to thank you all for continuing to pray for Jessie. I'm afraid I have batted around-- a simple idea, however powerful, can only be expressed so many ways. Please know we are more grateful for your prayers than I could ever express. Jessie is blessed to have so many people who love her.

Peace.

Matt

Wednesday, September 14, 2005 6:44 PM (Day +82)

Jessie has continued to have problems with a rash. The rash started on one leg last week and spread to the other leg over the weekend. At first, it was not clear that the rash was GVH (graft v. host disease), but when it spread to her torso yesterday and I brought her to clinic, there was no mistaking that it was GVH. Although this is not a major set-back, it is still concerning (mostly just to the parents). Yesterday, they decided to give her some IV steroids while we were in clinic. This seemed to clear up all but the worst of her rash on her knees. But when we got up this morning, it had spread back to her torso and a little bit on her arms.

Today was our regular day at clinic. Jessie got her weekly IV meds and some IV magnesium, which she has had trouble keeping the levels within normal limits since she was taken off TPN. Dr. Paul examined Jessie's rash and agreed that it is GVH. He did not seem that concerned because Jessie has had problems keeping her anti-rejection drugs (first Cyclosporine and now FK506) at a therapeutic level for weeks now. He thinks that this is causing the outbreak of GVH. Her dose of FK506 was increased again yesterday and it finally hit measurable levels today. The hope is that it will hit therapeutic levels in the next couple days and then the GVH rash will disappear. Until then, Jessie is on a small dose of steriods to keep it in check. I am keeping my fingers crossed!

Next week Jessie will have one of her central lines removed (she will keep the other one for awhile longer). This feels like such a milestone because the surgery to place the central lines marked the beginning of the transplant process. Jessie's numbers have been very good lately-- her platelets hit the 100,000 mark last week and continued to climb this week (Dr. Paul reassured me this would not be the case if she had serious GVH). She is also eating and sleeping normally again since the change from Cyclosporine to FK506. This is a huge relief for me!

It is really starting to hit us (Matt and I) that we will have a newborn to care for in about 3 weeks. It is exciting and scary at the same time. I'm sure Jessie will welcome the excitement in her life but I'm not so sure we are ready for the added excitement! I guess we'll manage.

Thank you for keeping Jessie in your thoughts and prayers. I have appreciated all the kind letters and personal emails--I have been able to reconnect with a number of people I had lost track of and it has been great. Take care- Cari

Sunday, September 11, 2005 5:05 PM EDT (day +79)

Thanks to everyone who expressed concern about my well-being. I never felt really sick, but with Jessie's compromised immune system, we weren't taking any chances. Thanks again to Sara (Jessie's godmother) for spending five days with Cari and Jessie. Her trip couldn't have been better-timed!

Jessie was miserable on Wednesday night and all day Thursday-- then the steroids kicked in. Her upset stomach went away. She has been feeling much better the past few days. Doctor Paul is amazing!

Jessie has had a rash on her right knee for several days. Doctor Paul looked at it Wednesday, and he thought it looked like irritation due to dry skin. Unfortunately, it hasn't improved, so when the rash appeared on her left leg this morning, we brought Jessie to clinic. The nurse practitioner looked at it and agreed with Doctor Paul's diagnosis-- probably just irritation, and not GVH. (Also, if GVH was causing the rash, the steroids probably would have helped.) We're keeping an eye on the rash, but it's not a major concern for now.

Jessie also had blood work done today. Her magnesium level was low, so they gave her an infusion while we were at clinic. Her FK506 level also was low. (FK506 is the drug Jessie is taking instead of cyclosporine as her chief anti-rejection drug.) They have already doubled her dosage since Wednesday, because her level on Friday also was low-- so it's puzzling, and a little troubling, that her levels have remained low. They increased the dosage again and will re-check her levels on Tuesday.

The rules for Jessie's isolation have been relaxed a bit. We can take her out in public, so long as there aren't big crowds and we keep our distance from other people. Jessie's favorite place so far is the Duke Gardens-- she loves to watch the ducks!!

Cari had an OB appointment on Thursday. Everything seems to be going smoothly. Jessie still pats her Mom's tummy and says "baby," but we don't think she understands. It wouldn't be the first time she's done something just because she figured out we think it's cute! From Jessie's perspective, her baby brother can't come soon enough-- even with her increased freedom, her day-to-day life is still pretty isolated and boring.

Several of you said that Jessie looked sickly in her birthday pictures. She isn't photogenic these days because her skin is discolored. This is a lingering effect of the chemo. Her discolored skin is gradually peeling off, so her skin looks blotchy.

Please continue to pray for Jessie. We are grateful for your support!

Matt

Wednesday, September 7, 2005 6:38 PM (Day 75)

I hope everyone had a good Labor Day weekend! Even though Matt had to be back home in Boston for the weekend due to his cold, we still had a fun weekend visiting with Aunt Sara! Jessie has enjoyed having someone new to play with and she has helped me out immensely! We will be sorry to take her to the airport tomorrow morning- I'm sure she is ready to get out of here!

Jessie had a good clinic visit today. All of her numbers looked really good so she only needed her weekly IV meds. She has been battling an upset stomach since Saturday and I thought it may have been caused by the increase in her Cyclosporine dose since it coincided with the stomach problems but Dr. Paul thought otherwise. He recommended that we treat it as upper GI graft v. host disease. This is a very common type of GVH for these kids. He started her back on a small dose of Prednisone and changed the Cyclosporine to FK506. The Prednisone should give her some immediate relief and, hopefully, the change to FK506 will permanently fix the problem. It seems like Jessie was having a problem absorbing the Cyclosporine and that is what led to the GVH. Two added bonuses of the switch to FK506 are that it tastes so much better and it does not cause excess hair growth on the body. Jessie was beginning to develop a fine fur over her entire body. This is very common and completely goes away once the drug is discontinued but some find it undesirable, especially on their daughters. For me, the improvement in taste was reason enough to change! Poor Jessie hated the Cyclosporine and didn't seem to mind her first dose of FK506- I hope this continues! I hope this clears up the stomach troubles because it is so hard seeing her doing so well (by the numbers) and yet feeling so lousy.

Matt is flying back tonight. He feels much better and will be wearing a mask for the day tomorrow just as a precaution. I'm sure he misses Jessie and will enjoy the weekend with her!

We had a quick visit with Jessica and Guy this week while they are on their southern tour. It was nice to see some familiar faces! We are looking forward to seeing all our friends at NHCC when we return home!

Thank you to everyone for keeping Jessie in your thoughts and prayers! Peace, Cari

Saturday, September 3, 2005 3:12 PM

Our plans for a long, holiday weekend together were foiled on Thursday when Matt felt like he was coming down with a cold. By early Friday morning, it was clear that he was getting a cold and that it was not allergies. He left the apartment immediately and is now back in Boston for the weekend. I franticly disinfected everything at the apartment before Jessie woke up and we are hoping that Jessie won't get the cold. She has an immature immune system right now but Dr. Paul thinks she is able to fight off some infections already. We'll just have to wait the 7-10 day incubation period to find out!

Jessie and I are getting ready to go to the airport to pick up our friend, Sara. Thank goodness she will be visiting for the next few days!

I hope everyone is having a great Labor Day weekend! Thanks for checking in and for continuing to pray for Jessie! Take care- Cari

Wednesday, August 31, 2005 6:06 PM (Day +68)

Let me begin by sending my prayers to Matt's cousin, Sean, and his family. They lost their home in Hurricane Katrina. They live in Ocean Springs, Mississippi and were able to evacuate in time so that they were not injured but I can only imagine the loss they have suffered.

Jessie is doing well and had a good day in clinic today. She received her weekly IV meds and some magnesium, as she is having a hard time keeping this number up. She takes magnesium oxide three times a day but still her levels hover just under the acceptable range. It hasn't become a problem as of yet but we are trying to keep it from becoming a problem down the road. Her meds were reduced slightly and everything looks good. There was much talk of the 100 day tests schedule and getting it all in before the baby is born. As long as I do not go into labor early, everything should be done well before the birth. Jessie will have one of her central lines removed in about 2 weeks. The removal requires minor surgery. She will keep her other line in place for awhile longer. She will continue to get weekly IV meds in clinic even when we go home to Boston, so the central line will still be necessary.

We are picking Matt up at the airport this evening and we are looking forward to the extra day he gets this weekend because of the holiday.

Thank you for all the prayers and support we received this week. Please say a prayer for Sean and his family and for all the families that were affected by the devastating hurricane. Peace, Cari

Sunday, August 28, 2005 8:55 PM Happy Birthday!

There are new pictures of Jessie's birthday celebration!

Jessie had a great birthday weekend! Thank you so much for all the wonderful cards and presents! Although she missed seeing everybody, she did enjoy eating some cake and opening all the treats!

Matt returned to Boston this evening for the work-week. His weekend visits always go by so fast! Jessie did better this weekend when I left to go shopping on Saturday- hopefully she will continue to tolerate my absence so that by the first week of October, it is no big deal!

Thank you again to everyone for following Jessie's progress. I hope you all had a good weekend! Peace, Cari

Saturday, August 27, 2005 8:30 PM EDT (day +64)

Jessie's birthday celebration continued today. Thanks so much to everyone who has sent greetings to Jessie-- we are touched that she is so loved. She doesn't understand the concept of "birthday," but she knows it's fun to get cards and gifts! There are cards all over our living room-- Jessie likes to read them over and over. And Jessie plays with every single one of her new toys! (This won't surprise those of you who have seen her play in her toy room back home.) It's wonderful to have a child who appreciates every little thing-- we'll never worry about Jessie becoming spoiled. I hope her sweet nature rubs off on her baby brother.

Today was a quiet day on the medical front. Jessie's WBC count was a little low, so she got IV medication (GCSF) tonight to stimulate cell growth. There's no cause for concern-- Jessie's counts are lower because she is now getting GCSF only on an as-needed basis. The idea is to give her body a chance to produce the cells on its own.

Thanks for your prayers. We hope you are having a wonderful weekend.

Matt

Friday, August 26, 2005 9:20 PM EDT (day +63)

Our friend Ken flew down and spent Wednesday and Thursday with us. Jessie has always been fond of him, and she was excited to have him stay with us! Cari and I were happy to see him too. Thanks Ken!

We got good news and bad news from Jessie's lab results today. Her RBC and magnesium counts were low, so we spent most of the afternoon getting infusions at the clinic. The good news, which is much more significant, is that Jessie's platelet level increased from her last test, on Wednesday. This is her second consecutive increase, which strongly suggests that her bone marrow has started producing platelets. Platelet production is one of the last things to come back after transplant-- again, Jessie is recovering ahead of schedule! As hard as the past few months have been, we never forget how blessed we are that Jessie's recovery has gone so quickly and smoothly so far.

Jessie is feeling better. Her bouts of nausea are fewer and farther between. Our only concern is her appetite, which has not been good the past few days. We're optimistic that the new red cells will help.

Jessie can't have a traditional birthday party this year, but as the cards and presents have arrived this week, they have created a festive atmosphere in our apartment! It will take a while for us to catch up on thank-you notes, but please know that your kindness has lifted our spirits in these still-anxious days.

I have to close on a sad note. A one-year old patient named Emma, who was on the transplant unit with Jessie, has been sent home. Apparently, her leukemia is out of remission, and there's nothing the doctors can do. Please keep Emma and her family in your prayers.

Thanks for praying for Jessie and continuing to follow her progress! Have a great weekend.

Matt

Thursday, August 25, 2005 9:20 AM (Day +62)

Jessie has had a good week so far. Her stomach has seemed less upset and the vomiting has subsided. She still is not eating as much as she usually does but I hope that will improve this weekend! I'm not sure if it helps that we are trying to give the cyclosporine with food now or if she is just tolerating it better than she was at first but I'm just glad she is feeling better!

We had a long day in clinic yesterday. Jessie received her weekly IV meds and another IV med that she receives monthly to fight a specific type of pnemonia. Last month when she received this drug she became violently ill so I was expecting the same reaction this time. They decided to treat her with some pre-meds and that seemed to do the trick-- either that or it was a fluke last time! Jessie did fine and was in rare form for the nurses- giving them her best show while the Wiggles were on!

We also saw Dr. Paul in clinic yesterday. He shared with me the results from an immune system function test he ran last week. He was very impressed with the results and feels that Jessie's immune system recovery is ahead of schedule. He estimates that she has about 25% of a healthy immune system now. The test measured the proportion of specific cells that are present in a healthy immune system, including T cells, B cells and phagocytes. Jessie not only has developed mature T cells but they also seem to be doing their specific jobs to fight infection. As a result, he gave us the green light to take Jessie out in open places as long as she wears her mask. This means that she can go "people watching" and for longer walks. He thinks we will be able to expand this to playing outside in a few weeks!

Jessie's meds were reduced again and she is no longer getting any late night doses which is great news for both of us! Her 100 day studies have been scheduled for the last week in September (which is a week early) because the baby is due the following week. We will take our time getting back to Boston after the baby is born- no sense rushing it at that point!

Thanks to everyone for continuing to pray for Jessie and for all the support! Thank you to Hugh and Marge for generously giving Matt your frequent flier miles- it has helped him to be able to come down to see us every weekend! Take care- Cari

Sunday, August 21, 2005 5:35 PM EDT (day +58)

After a happy day yesterday, Jessie threw up twice overnight. Cari called the clinic, but they weren't too concerned. They said lots of kids have problems with the switch from IV to oral cyclosporine, and it works itself out in time. We were glad to hear that.

Despite having a bad night, Jessie has had a good day so far. She even let me take her (without Mom) on her big trip for the day-- to Wendy's to pick up lunch at the drive thru. Yes, Jessie has a boring life these days. After all she's been through, boring is good.

Thanks for checking in, and for praying for Jessie.

Matt

Friday, August 19, 2005 8:50 PM EDT (day +56)

Jessie has thrown up overnight each of the past two nights. We think her cyclosporin is responsible. They switched this drug from IV to oral on Wednesday, and it upsets her stomach. Cyclosporin is an important anti-rejection drug, and Jessie will need to be on it for a long time. All we can do is hope her body adjusts.

As you'd expect, Jessie hasn't felt her best the past two days. She has watched lots of TV, which is what she does at home when she's not feeling well. She's still eating and drinking, laughing and smiling-- we're not too worried.

Cari's pregnancy is going well-- early October isn't far away! Jessie sometimes pats Cari's tummy and says "baby," but it's hard to know if Jessie really understands. One thing is certain-- she knows we think it's awfully cute when she lays her head on her Mom's tummy. We think she'll be thrilled to have a baby of her very own! Sharing her Mom with a little brother won't be so much fun, but I'm sure she'll manage to endure the transition from spoiled only child to spoiled eldest child.

Thanks for your continued prayers. Have a wonderful weekend!

Matt

Wednesday, August 17, 2005 8:55 PM (Day +54)

Jessie had another good day at clinic today. She slept in until 7:45am, so we got to clinic a bit later than we usually do for a Wednesday. She received her weekly IV infusions and then we saw Dr. Paul. Jessie continues to improve with each week that passes and today her meds could be reduced again. It is getting a bit easier to juggle her oral meds and she is almost completely free from IV meds from home (she will continue to get her weekly IV meds at clinic for quite awhile yet). It is great to see her interact with Dr. Paul- he is the only doctor that Jessie has ever been better than neutral with. He is wonderful with the kids!

What is even more amazing is that Dr. Paul is convinced that Jessie's liver has shrunk back to almost normal size. Her liver has been enlarged since she was diagnosed. It is common for children with Sanfilippo to have enlarged livers and spleens from excess storage in these organs. The only explanation for its reduction is that Jessie must be producing her own enzymes now and they are working to break down and eliminate excess storage that has been building up since birth. This is a very good sign and it is extremely early to already see these improvements.

We picked up Matt at the airport this afternoon and Jessie was very excited to see her dad. She enjoys Matt's company but still relies on me for her care and comfort. We are slowly trying to get her used to the idea that dad (or others) can provide some care and that mom leaves and returns without the world ending. It is about 7 short weeks before I will have to leave her for a couple days to have her baby brother. It will be a very traumatic time unless she gets used to the idea beforehand! Two of our close friends are planning to come down for the week that the baby is born. Jessie is very comfortable with these friends and used to seeing them regularly when we are at home. Hopefully, this will lessen the blow.

It has been great to see some of our friends from 5200 in clinic over the last week or so- it is so good to see so many kids doing so well! At the same time, we continue to pray for the children and families that are struggling with transplant recovery and loss. Thank you all for praying for Jessie and following her progress. Peace, Cari

Monday, August 15, 2005 6:35 AM

We just dropped Matt off at the airport. He will just be spending a couple days in Boston this week and then he will be returning to Durham.

We had a great weekend together! Jessie had the weekend off from clinic and did a lot of playing- especially with her Pooh House, which had been at home while she was in the hospital. She still likes to have Pooh knock on the door and acts very surprised when she opens it and it is Pooh! This toy started out as her favorite toy her speech therapist, Tanya, would bring to the house for her therapy. When we had to discontinue therapy at home to come to Durham, her therapists at home bought her a Pooh house of her own and it has been her favorite toy ever since!

Jessie had her last IV infusion last night (other than the short IV infusion she gets less often to help white cell production). It was getting harder and harder to keep her quiet for 2 hours while it infused. She wants to get off the couch and play a lot more now that she is feeling better!

I was thinking over the weekend how much food the typical transplant family wastes in an effort to keep their kids eating! Jessie regularly (maybe twice a day) asks for something to eat and when I make it for her, she decides it isn't what she wants anymore! I guess this is typical for most transplant patients of all ages, not just 2 year-olds! Talking to the teenagers (Michael & Ashley) who have been through transplant has helped me understand what it is like for Jessie. They explain how food just doesn't taste the same as it did before transplant. They also tell me how much the meds upset their stomachs and how they feel tired so much of the time. It is really amazing how well Jessie has tolerated this entire ordeal!

We are off to clinic today- Jessie will probably need a platelet transfusion today. Platelets are one of the last things her new bone marrow will start to produce, so it is normal for her to need so many transfusions. She did make it a week this time- which is progress!

I hope everyone had a good weekend! Thanks for checking in and thanks for the continued prayers for Jessie! Take care- Cari

Friday, August 12, 2005 3:45 PM EDT (day +49)

We started our day with a little unnerving news-- our physical therapist called to cancel her visit today because she has a cold. Unfortunately, she was here yesterday afternoon working with Jessie. She had no way of knowing, but she probably was contagious. To make matters worse, Jessie has been sneezing sporadically for at least a week-- so now we'll panic every time she sneezes! We obviously hope Jessie doesn't catch a cold, but if she does, it shouldn't be life-threatening-- it will just take her a very long time to shake it.

Jessie's clinic appointment today went well. Her RBC count was actually higher today than on Wednesday!! Her platelet level, however, dropped like a stone. That's not troubling, but instead of having the weekend off, Jessie may need to go to clinic on Sunday for a transfusion.

While we were at clinic, two (other) physical therapists stopped by and took casts of Jessie's feet and legs. They are going to construct new braces for her. The new braces will fit on Jessie's legs without stretching and will have a special hinge to allow us to stretch Jessie's heel cords gradually. This seems like a promising approach-- we hope it works better than the other things we have tried. The long-term goal is to allow Jessie to walk without support, but she needs to rebuild her strength before we can begin to think seriously about that.

We hope everyone has a great weekend! Thanks for your love, support and prayers.

Matt

Wednesday, August 10, 2005 1:21 PM (Day +47)

I apologize for being so delinquent in my update! It can get very busy with all of Jessie's appointments and meds! I will, at the very least, try to update on Wednesdays after Jessie sees her doctor in clinic (Dr. Paul).

Jessie made it to the 45 days post-transplant milestone on Monday, which entitled her to a day off from clinic for the first time. Yesterday was her first opportunity to be away from the hospital for 24 hours! On Monday, she received a transfusion of platelets and hemoglobin in anticipation of the big day (her numbers had been borderline low for a number of days). Yesterday, she slept in until 8am and had a great day playing with Rebecca and Tori (Jessie's Best Buddy). We even went for a short walk outside to get the mail- we just got the okay over the weekend to take Jessie for a walk outside as long as she wears her mask. Yesterday was the first day it wasn't too hot, humid and sunny to go for a walk. Jessie loved being outside and away from the hospital for an entire day!

Today Jessie saw Dr. Paul in clinic. On Wednesdays, Jessie gets 2 weekly IV meds in clinic and sees her doc. Some of her meds were adjusted, a couple were dicontinued and 2 were changed from IV to oral. This means that by Monday morning, Jessie will only be getting 1 IV med every other evening (and it only takes 1/2 hour to infuse)! Since discharge, Jessie has been getting 2 IV meds every morning and evening and they both take 2 hours to infuse- this means that she has had to be hooked up to a pump for 2 hours every morning and every evening. It will be such a delight to be free from the pumps for 99% of the time she is at home! It does mean that she will have to stomach 2 more oral meds but we will try to handle that the best we can.

Matt is returning tomorrow morning and it looks like Jessie will have the weekend off from clinic. It should be a good weekend to relax and play! We said good-bye to Rebecca at the airport this morning and we both thank her so much for coming down for a few days!

Thanks to everyone for following Jessie's progress- it warms my heart! Take care- Cari

Saturday, August 6, 2005 9:30 AM EDT (day +43)

Jessie had another good day and night. She still watches a lot of TV, but she also plays with her toys, reads, and walks around the apartment (with help, of course). She probably would be more energetic if her red blood cell count wasn't a little low-- for the past few days, her count has hovered just above the level at which they'll give her a transfusion. The good news is that this means she could be producing her own red cells, which would be ahead of schedule. (Red blood cell production usually doesn't begin until two months after transplant.)

Tonight will be Jessie's last night receiving TPN (IV nutrients). Aside from being another milestone, I think this will help Jessie feel better. Jessie is clearly eating when she's hungry, and she isn't having problems digesting her food. (She has thrown up a couple of times since discharge, but only because she gagged while taking her meds.) Also, the IV machine beeps loudly when the TPN is done (at about 6:30), and I think it has cut short her sleep a couple of times.

We had the shortest clinic visit yet yesterday-- only 30 minutes! Jessie's blood pressure was normal and she didn't need any infusions, so they gave her a quick exam and sent us home.

Our friend Rebecca is flying down from Connecticut tomorrow to spend a few days with us. We're looking forward to seeing her!

We hope everyone is having a great weekend. Thanks for your continued support and prayers.

Matt

Thursday, August 4, 2005 9:30 PM (Day +41)

Jessie has had a good week. Dr. Paul adjusted her meds on Wednesday and I think she is headed in the right direction. She has been sleeping well but her appetite comes and goes. She is definitely happier when she can hold down a couple good meals! She also tolerates the meds better when she has some food in her stomach. We had one incident with vomiting this week after a couple doses of meds- it hasn't happened in awhile, so I'm not too concerned but I know it is something a lot of kids Jessie's age have to deal with. We try to space them out but sometimes it just doesn't help. Reducing her meds over the next 2 weeks will certainly help.

Matt is back tonight and his parents are leaving in the morning. Jessie was very happy to see her dad and gave him lots of hugs and laughs! Big thanks to Nana and Grandpa for helping this week! Also, thanks to Ingrid, Bill and Hannah for watching our 4-legged children this weekend while Matt's down visiting!

Hope everyone is well. Thank you for the continued support! Peace, Cari

Tuesday, August 2, 2005 7:45 PM (Day +39)

Jessie is doing great. She is enjoying being out of the hospital and only wishes she could go more places. She has been eating and sleeping well. Clinic hasn't been that bad but tomorrow is our first Wednesday- the day Jessie sees the doctor and gets all her weekly IV meds. I imagine we will be spending a good portion of the day at clinic.

Matt's parents have been a big help. Shopping, cooking, cleaning, entertaining Jessie while I get her meds together- all the things that wouldn't get done if I were on my own! Jessie is still very clingy but she will let her grandparents take care of her as long as I am still in view!

It is a lot of work but well worth seeing Jessie slowly return to her pre-transplant self! Thanks for continuing to follow her progress. Peace, Cari

Sunday, July 31, 2005 4:52 PM

I forgot to mention that I have updated the pictures!

Jessie had another good day today. We had a relatively short visit in clinic today and were back to the apartment for lunch. It was nice to see some familiar faces in clinic today- Michael (from down the hall on 5200) and his mom were in the waiting room with us this morning. I'm sure we will be seeing others shortly (Frankie from CT).

Matt left very early this morning to drive back to Boston for the week. I know Jessie will miss him this week! Matt's parents should be arriving shortly- they are coming to help out for the week. I'm sure Jessie will be ready for someone new to play with as soon as they enter the apartment!

Our thoughts were with our friends Keirsten and Anna this weekend as they celebrated their wedding vows! We were sorry to miss such a joyful occasion!

I hope everyone had a good weekend! Thanks for checking in and thanks for the continued prayers! Cari

Saturday, July 30, 2005 3:00 PM (Day 36)

Jessie had a great night last night and has had a wonderful day today. After sleeping a solid 10 hours last night (without interruption), she woke up ready to play! Matt dropped her blood off for lab work early (minimizing the wait in clinic) and we arrived around 10am. By noon, we were back at the apartment eating lunch! Jessie's numbers look great and she is adjusting to the new apartment. Aside from a sneeze here and there (which completely freaks us out), she is adjusting beautifully. The docs think her sneezes may be from an environmental irritant that she will adjust to or it could be caused by her prolific cell production. Her white count is now over 20 (which is actually too high) and her meds have been reduced yet again to help reduce the production.

I am reminded everyday how lucky we are. Jessie's recovery is going about as smoothly as it could be and she is enjoying life once again. I know there will be bumps in the road ahead, but for the moment, I am thankful for great fortune we have!

Hope everyone is having a good weekend. Peace, Cari

Friday, July 29, 2005 9:07 PM

Jessie's first day out was very busy but she had a great day! She slept well last night and has already been sleeping for an hour on the couch this evening- we just transferred her to bed! Clinic is a long, grueling process. We were there for about 6 hours today. Jessie had to get platelets but otherwise, she is doing fine. She was not happy with me when she realized we were heading back into the hospital today but she was so excited when the doctor came to tell us we could go home! She laughed and sang all the way home in the car. Even though it is a lot of work having her home, it is worth it!

Thank you everyone for following Jessie and for all the prayers and postive thoughts! Take care- Cari

Friday, July 29, 2005 7:50 AM EDT

Yesterday, on the 34th day after her transplant, Jessie left the hospital.

Jessie's discharge evoked a range of emotions. We are thrilled to be together as a family. We are profoundly grateful to everyone at the hospital who helped us the past month and a half (especially the nurses), and we were sad to say good-bye. We are proud of Jessie for the strength she has shown through this ordeal. And we are a little anxious to be outside the protective bubble of the transplant unit, where a team of nurses and doctors were always just outside our door if Jessie needed anything.

We know that God has been with us through this whole process. I suppose we could be angry at God for allowing Jessie to get this awful disease in the first place. (I certainly went through a time of intense anger about that.) Now, however, we choose to be grateful for all the blessings God has given us. First among those blessings is the privilege of being Jessie's parents. Of course all parents feel this way, but we sincerely believe that Jessie is the most amazing kid we know! Her sweetness, her strength, and her ability to stay in the moment have kept us going. She is worth everything we have gone through so far, everything we will go through in the future, and then some.

Yesterday was a draining day. In the morning, we packed up everything in the room and picked up Jessie's 14 medications (!) from the pharmacy. We waited for a while to get final clearance from the doctors, finally leaving the hospital shortly after noon. When we got home, we unpacked the car and got Jessie settled. Although we had done a lot to prepare the apartment for Jessie's arrival, some things just didn't get done-- for example, we had no food and needed to go grocery shopping right away. In the afternoon, a visiting nurse came by to walk Cari through the process of administering Jessie's medications. By the time that was done and we ate dinner, there was a nasty thunderstorm rolling in. Thus, no journal entry yesterday. Sorry!

Jessie likes our home-away-from-home in North Carolina. She's able to play with a lot of toys we couldn't bring onto the unit, and she loves having all her books again! (We couldn't fit all her books in that tiny hospital room, and she wasn't well enough to read most of the time anyway.) Perhaps most of all, she is happy to have real food to eat, instead of hospital food. She likes to sit in her high chair and watch TV while she eats. Special thanks to Dawn and Tony for the Dragon Tales videos. After watching the same six videos over and over on the unit, she's excited to have something new!

Another visiting nurse will come at 8:30 to check on Jessie and take blood samples. After that, Cari and Jessie will be off to clinic for the day. I will stay here and catch up on work.

Please continue to pray for us. Thanks for your support!

Matt

Wednesday, July 27, 2005 6:52 PM EDT (day +33)

Jessie's WBC count slipped to 7.5. The doctors are unconcerned; she is well within the normal range. Her blood pressure was stable overnight and remained good all day. Unless we have a setback overnight, they will discharge Jessie tomorrow!

We got a pass today and took Jessie to the new apartment for three or four hours. She loved it! She was laughing and singing on the ride to the apartment. When we got inside, she crawled all over the place, checking everything out. She was excited to see her toys that we didn't let her bring onto the unit. Most amazingly, she talked nonstop-- she probably said more in those few hours than she has in the past week! I can't remember ever seeing her happier!!

All the activity definitely tired Jessie out. Hopefully she'll sleep well tonight. If we are discharged as planned, tomorrow will be another busy day.

I don't know how much Cari has written about Jessie's outpatient treatment. We'll be here for at least another three months. For the first two weeks or so, Jessie will be seen at the outpatient clinic seven days a week. They will give her medications we can't give her at home, run tests, and basically monitor her progress. We also will give Jessie medications (both IV and oral) at home, and at least at first, we will give her IV nutrients as well. After a while, the visits to clinic will become less frequent. By the time we are ready to go home, Jessie will only be going to clinic once a week. For the whole time we are here, though, we will need to draw blood every day and deliver it to the labs at Duke for testing.

Jessie will remain at risk for infection. We won't be able to bring her to public places, and whenever she leaves the apartment she will need to wear a surgical mask. Visitors are limited, and will need to follow some special procedures. (If you're one of the people coming to help us, we'll fill you in on what you need to do.)

We're so excited to be living together as a family again, at least four days a week! We thank God for the progress Jessie has made so far, and we pray for God's continuing help in the weeks and months ahead. Thanks to all of you for your support, your prayers, and your encouragement. God bless you.

Matt

Tuesday, July 26, 2005 10:00 PM EDT (day +32)

Jessie's WBC count fell to 9.3 today. Yesterday's count was actually at the high end of the normal range, so Jessie is doing fine. Her blood pressure is still high, so she won't be discharged tomorrow. We hope she'll be able to leave on Thursday or Friday.

Jessie was much happier today than the past two days-- laughing, eating, and acting more like herself. Cari and I are eager to be together again as a family-- even if it's in an apartment with rented furniture. We're disappointed that we'll have to wait a little longer, but hopefully it will only be another day or two. Everything is still moving in the right direction.

Cheryl was Jessie's nurse today. She has the next few days off, so this probably was her last time taking care of Jessie. I don't know how to express how much Cheryl has meant to Jessie, and to Cari and me. Cheryl and Jessie bonded instantly-- our first night on the unit, Cheryl walked into the room, and Jessie smiled at her right away! When Jessie was feeling her very worst, Cheryl was the one nurse she trusted completely. As Jessie started feeling better, she decided that Cheryl's job was to be her friend. Of course, Cheryl had other patients to care for, and other tasks to do, but when she was on duty, I know Cheryl made Jessie feel like she was the only person in her life! Whether she was taking the time to listen to (Curious) George's heart in addition to Jessie's, or holding Jessie's hand so she'd tolerate having her blood pressure taken for the fifteenth time of the day, Cheryl always went the extra mile for Jessie. She was also a huge help to Cari and me. We always felt comfortable asking her questions, and we knew she'd always shoot straight with us. She also has been a big help preparing us to care for Jessie after discharge. Right now, it feels like we're losing a friend, but we will always be grateful to Cheryl for everything she has done for us. She's an great nurse and a great person.

As always, thanks so much for thinking of us, and praying for us.

Matt

Monday, July 25, 2005 9:30 PM EDT (day +31)

Jessie's WBC count skyrocketed from 9.5 yesterday to 11.8 today. Everyone is amazed!

Preparations for Jessie's discharge continue. The doctors are reducing her dose of methadone tonight, with an eye toward weaning her completely before discharge. They also are adjusting her blood pressure medication. Jessie's BP has been going up a bit at night, and they have been treating this with a small dose of a stronger medicine. In the hospital, this is no big deal, but we can't give her the stronger medicine at home. They are increasing the dose on Jessie's milder BP meds; hopefully, this will eliminate the need for the strong stuff.

Unfortunately, Jessie hasn't felt as well today as she has the past few days. She has thrown up twice today, and she just had a nasty bout of diarrhea that was reminiscent of the stuff she had when her mucositis was bad. Not surprisingly, she hasn't eaten much. She has also been less happy today, though she certainly has had her funny moments. I don't want to make this sound worse than it is-- Jessie is still doing far better than she was a week ago. I wonder, though, if they will delay Jessie's discharge if she still feels this way tomorrow.

We've had to say good-bye to two more of our favorite nurses today-- Jona and Carolina. We're going to miss both of them.

Jona was Jessie's night nurse yesterday. Jona probably spent more nights with Jessie and me than any other nurse. It won't surprise any of you to learn that I need much more help than Cari. Jona was so helpful, and so patient-- if my ineptitude ever annoyed her, she certainly never let on! Jessie loves her-- she gave Jona a big hug when she left this morning. (And as many of you know, Jessie can be quite picky about who she hugs.)

Carolina is taking care of Jessie tonight. Carolina hasn't been at Duke long, and she doesn't get to be part of any particular patient's "team." Fortunately for us, Carolina signed up to take care of Jessie whenever she could, and when she wasn't taking care of her, she would always pop in and say hi. Jessie loves her too-- even though she wasn't feeling well, she snuggled with Carolina so we could get a picture of the two of them. Jessie even smiled!

We are blown away at how many people are checking the site! Jessie is blessed to have so many people who care for her. We are grateful for your support, and especially for your prayers.

Matt

Sunday, July 24, 2005 8:35 PM EDT (day +30)

Jessie's WBC count climbed again, from 9.0 yesterday to 9.5 today. She still has essentially no immune system, but the new cells are hard at work repairing the damage the chemo did to her body. Her scalp looks much better than it did just two days ago, and her mucositis has all but disappeared.

Jessie felt great for most of the day. She ate breakfast and lunch, played in the hall for a whole hour (!), and smiled and laughed a lot. Unfortunately, at about 5:00, she suddenly turned pale and started to vomit. That was soon followed by diarrhea. Cheryl was concerned. The doctors checked Jessie out-- it appears she had an allergic reaction to her anti-pneumonia medication. She feels better now, though she's still a little nauseous. Fortunately, Jessie doesn't need this drug again for 30 days.

We're still preparing for discharge on Wednesday. The nurses are teaching us what we will need to know to care for Jessie. Cari is a quick study. Also, the doctors are switching Jessie from IV medications to oral ones whenever possible. As I think we've said before, oral meds are the one thing Jessie doesn't tolerate well. I hope this improves when we're out of the hospital, and Jessie doesn't feel like she's being poked and prodded every 30 seconds. (Before we came here, she was pretty good for her age about taking medicine.)

Getting ready for discharge also means starting to say good-bye to the nurses who have done so much for Jessie. Jessie's nurse last night was Kelly. Kelly has taken care of Jessie many times, including a few days in a row about three weeks ago, when Jessie was at her worst. She always did a great job, and Jessie loves her. Kelly is off until Thursday night, so unless we're still here then, she won't be our nurse again. I said good-bye this morning. Thanks Kelly-- we'll never forget you.

We heard that Frannie's life support was turned off this afternoon, as scheduled, and that she passed away. The address for Frannie's web page is below; her Mom posted a beautiful tribute yesterday to her daughter. (Don't read it if you want to remain dry-eyed.)

http://www3.caringbridge.org/nc/frannie/

Thanks for checking in. We are grateful for your continued prayers.

Matt

Saturday, July 23, 2005 8:05 PM EDT (day +29)

In my excitement yesterday about Jessie's DNA test, I forgot to mention her white-cell counts. Her count yesterday was 7.8; today it was 9.0. It's hard to explain how amazing these numbers are-- even the doctors and nurses are stunned!

Jessie has been laughing and playing a lot today! Cari posted some new pictures on the site. We took them in the room, so everyone could see Jessie without her mask.

Cari and I went out for two hours this afternoon and left Tori (Jessie's "best buddy") in charge. This was our first time together without Jessie in two months. We celebrated by grabbing a meal at Taco Bell and looking for apartments. Unfortunately, we didn't get a good report on Jessie's behavior when we returned. She spit out her oral meds twice and was basically a pain, though she eventually settled down and let Tori read to her. When we returned, Jessie was sleeping peacefully.

We found a new apartment! It's a little more expensive than our old one, but we'll live. They said they can have all the paperwork done so we can move in on Wednesday. This is a huge relief!

I saw Frannie's Mom in the hall today. If anyone ever figures out the right thing thing to say to a person in that situation, please let me know.

Thanks for your prayers. We hope everyone is having a good weekend.

Matt

Friday, July 22, 2005 8:20 PM EDT (day +28)

It has been a crazy, up-and-down day.

We got the results this evening from Jessie's DNA test. Over 98% of her blood cells are donor cells. This is the highest possible score on the test-- in other words, the transplant was a success!! Jessie will still be at risk for complications (infection, rejection) for several months, but this is the best news we've received to date.

Cari's reports (both on this site and over the phone) have been extremely positive, but I didn't fully appreciate how much better Jessie is doing now than she was five days ago. Her silly, infectious laugh is back! So is her unique sense of humor. She laughs when the grown-ups laugh. She laughs at other things she thinks are funny, even if no one else gets the joke. And sometimes, she laughs for no apparent reason. She laughs a lot!

Jessie is eating well too. She even ate a slab of salisbury steak today! (Ugh-- neither of us would have touched it.) I've never seen anyone as happy to see hospital food as she is when her tray arrives.

Jessie's scalp looks better, though her scratching has opened a couple decent-sized wounds. One of them is on the back of her head, and she has a band-aid covering it. It totally looks like Marcellus Wallace from "Pulp Fiction." (If this reference is lost on you, don't worry about it.)

Jessie is still on track for discharge on Tuesday or Wednesday. Unfortunately, we don't know where we'll be taking her. I walked through our apartment this afternoon with a home inspector. Some of the mold we told the management about is still there, and the inspector pointed out mold in several other places that we hadn't seen. Also, they still haven't cleaned up the apartment and fixed all the other problems I told them about last week. After the inspection, I went to the office and told the assistant manager that we will vacate the apartment and expect to receive compensation. She was sympathetic. We'll see if that translates into them cutting us a check. In the meantime, we need to find a new place to live immediately, if not sooner.

Unfortunately, I have to close with sad news. Kameron, a 2-year old boy on the unit, died last night. In addition, a young girl named Frannie is scheduled to have her life support removed on Sunday. Miracles do happen, but it seems unlikely in this case-- the family has even begun making plans for a memorial service. The news about Kameron and Frannie certainly has tempered our joy about Jessie's test results. Please pray for these two families.

Thanks, as always, for your support and your prayers.

Matt

Thursday, July 21, 2005 7:30 PM (Day +27)

Jessie had a great day! She laughed and played all day. She was able to be off her IV for a few hours which allowed her some freedom and they also let us go for a walk off the unit! She ate 3 meals- pancakes for breakfast, baked ziti for lunch, and chicken tenders and mashed potatoes for dinner. This means that they can decrease her TPN even more. Her white count is 5.7 today- which means she is working pretty hard to grow cells!

She is down to just a few IV meds and it looks like she will definitely be ready for discharge by next Wednesday! She has really blown us away- what a strong kid!

Thanks for all the prayers- they are paying off! Take care- Cari

Wednesday, July 20, 2005 2:05 PM (Day +26)

Jessie seems to be doing better and better each day. She has been in a good mood today and it is so nice to see! She has been drinking more and even ate some pizza last night for dinner. Unfortunately, it didn't stay down but it was a good first try. She ate some noodles for lunch today and I think we may have better luck with that. Her TPN (IV nutrution) is going to be reduced because she is able to drink now and if she continues to eat, it will be further reduced.

Last night she slept the best she has in quite awhile. She fell asleep around 9pm and didn't get up until 8am this morning. What is more remarkable is that she only woke up when her blood pressure was taken instead of periodically throughout the night. Her hemoglobin was low this morning so she got a blood transfusion and she will probably need platelets soon too. These types of things will be done in clinic once we are discharged.

Another med was discontinued today (antibiotic) and another was changed to oral (from IV). Dr. Paul has penciled her in for discharge next Tuesday or Wednesday. I can't believe the progress she is making! We are so excited that she is doing so well!

Thanks to everyone for continuing to follow Jessie's progress! Take care- Cari

Monday, July 18, 2005 9:35 PM (Day +24)

Jessie had a very good day today. Her white count is 5.3. She seemed much more comfortable and happier than she has been in the last few weeks. She walked and played in the hall and went to art class in the afternoon. She also participated in speech therapy for the first time in awhile. She ate some sour cream and onion potato chips- no way she would have eaten them before the chemo! This evening she even laughed at the TV show "Everyone Loves Raymond." I think she was just laughing at the laugh track because the show is really not funny!

Dr. Paul is very pleased with her progress and thinks she will be ready for discharge in about 1 week. She was taken off 2 more IV meds today and she seems to be doing fine. Way to go Jessie!

Thanks for all the prayers- Cari

Sunday, July 17, 2005 8:52 PM (Day +23)

Jessie's white count is 4.3 today and her ANC is over 3000. They will stop calculating her ANC on a daily basis now because she has engrafted and it was been consistently over 3000. Her numbers are where they need to be for discharge. They will send her blood for the DNA test tomorrow to determine the percent of donor cells. The test takes about a week to run. We are keeping our fingers crossed!

Jessie is slowly being taken off some of her meds in preparation for discharge. We are taking it slow- there is no reason to rush her at this point. She is feeling a bit better and has even taken some food and drink this weekend after several weeks of not being interested in eating or drinking anything. She walked and played in the hall a lot this weekend and it really tires her out but also improves her mood. She is showing signs of depression and, really, who wouldn't? I think she is just sick of this place-- I know she is tired of having her blood pressure checked every hour!

One of Jessie's doctors, Joanne Kurtzberg, is in this week's issue of US News & World Reports. She is the recipient of the Children's Miracle Network Achievement Award for her work with pediatric bone marrow recipients. The little boy in the picture with her is a boy who suffered from Sanfilippo Syndrome and was one of the first to receive a transplant. Tragically, he did not survive the transplant. His mother was one of the people I spoke to when we were deciding if a transplant was right for Jessie. She has two older children with Sanfilippo and knows first hand what children go through in the later stages of the disease. She continues to stand by her decision to attempt a transplant for her son. She helped us make our decision and I applaud her for being such a brave mother!

I hope everyone had a good weekend! Matt is on his way back to Boston for the week but we enjoyed the weekend together. Thank you for the continued prayers and support. Peace, Cari

Saturday, July 16, 2005 8:10 PM EDT (day +22)

Jessie's white-cell count slipped to 4.0 today from 4.2 yesterday. This isn't a significant change. In fact, anything between 3.8 and 14 is considered normal. That doesn't mean Jessie has anything like a fully functional immune system-- that will take almost another year. The new cells do, however, help repair some of the damage the chemo did to Jessie's body. For example, her diaper rash and mucositis are much less severe than they were several days ago.

Today started very much like yesterday did-- when Jessie wasn't sleeping, she was totally miserable. We weren't sure of the cause, but we decided we had to try something. The nurse gave Jessie an IV dose of Ativan (anti-anxiety drug), and this worked wonders. She made me read to her for over an hour, and she spent more time playing in the hall than she has in the past two weeks! Basically, she acted a lot like she does at home when she's under the weather.

We're now pretty sure that the steroids are primarily responsible for Jessie's recent misery. Even the Ativan doesn't take the edge off entirely. While we were playing this afternoon, she got hold of my cell phone. I let her play for a while, but I eventually had to take the phone away to keep her from breaking it. The phrase "'roid rage" best describes her reaction; she was furiously angry and inconsolable for about 30 seconds, then she instantly calmed down and went back to whatever she was doing before she started playing with the phone. It would have been awful scary if she wasn't just a two year-old!

We got the keys to our apartment yesterday. Sadly, it's a disaster. We were told the place would be completely renovated-- it's not renovated at all. We said repeatedly that it was crucial to have no mold anywhere in the apartment-- there is mold covering one bedroom window, and under the sink as well. To add insult to injury, the dishwasher doesn't work, the washer and dryer weren't delviered, and they didn't even bother to hang the closet doors on their hinges! I went to the apartment office this morning, ready to unload my Irish temper on someone. Come to find out, the guy who rented us the apartment was fired yesterday; apparently, this isn't the first time he's done this. The manager was totally apologetic and promised to fix all the problems by next Friday. We'll see what happens.

We hope everyone is having a great weekend! Thanks for your support and prayers.

Friday, July 15, 2005 7:35 PM EDT (day +21)

Jessie's cell counts continue to amaze us! Her white-cell count today was 4.2, and her ANC was 3276. Her blood cultures continue to show no signs of infection. Doctor Paul is very pleased with her progress!

That's the good news. The bad news is Jessie is miserable. We don't know if she is uncomfortable, in pain, or just plain irritable. Doctor Paul has reduced the dose on her steroids to see if that helps.

On a lighter note, Jessie attempted to eat a turkey sandwich for dinner. After a few bites, her throat got sore, so she ripped the sandwich into pieces and rubbed a few pieces of turkey over the scabs on her scalp! She made quite a mess, but it was fun to watch her do something so silly!

Thank you for praying for Jessie.

Matt

Thursday, July 14, 2005 3:38 PM (Day +20)

Jessie's numbers were about the same yesterday but today her white count is up to 3.1 and her ANC is 1984. She continues to have a low-grade fever (around 100.5) and has been quite miserable. All of her cultures have come back negative so far so it is all quesswork as to why she is feeling so bad. There are probably a few things at play, e.g., bone pain, withdrawal from the narcotics, but today the doctor has decided to overhaul some of her meds in case she is experiencing graft v. host disease. A new drug will be started that specifically targets cells that are fighting the new cells. This means that her steroids will be decreased (steroids can also be causing irritability) and we should see some relief in a day or two.

It has been hard seeing her so miserable and yet seeing her numbers continue to climb. It is a puzzle trying to figure out what is causing her pain and discomfort. I hope things start to improve for her this weekend!

Thank you for all the cards and gifts for Jessie. She loves to look at all the cards before I hang them on the wall. Her room looks about as cheerful as a hospital room can! Take care- Cari

Tuesday, July 12, 2005 8:06 PM (Day +18)

Jessie's white count is 2.4 today and her ANC is 1608! Her numbers are certainly impressive! She is also on 25, yes 25, different meds. I found out today that she needs to be down to only 7 IV meds by discharge. Some of the meds can just be changed to oral but a lot of them need to be discontinued. We started today by discontinuing her narcotics. The docs think it was causing her some itchiness and nausea and it isn't really helping with the bone pain at this point. Instead, she was started on Methadone to prevent any withdrawal from the narcotics. So we discontinued one and started another! She was also taken off one of her 3 antibiotics this morning because she hasn't had a fever in a week. Then this evening she spiked a fever of 100.7 and it was restarted until the cultures come back negative. Weaning her off these meds will not be an easy task!

She is feeling better and I think taking her off the narcotics will only help her feel more like herself. I hope the fever is nothing and that she doesn't have a bug! She certainly is not acting sick.

Take care and thanks for all the support as this journey continues! Cari

Monday, July 11, 2005 7:30 PM (Day +17)

Today was the first day of engraftment! Jessie's white count shot up to 1.8 and her ANC is 837! After 3 days with an ANC over 500, she will officially be considered engrafted. Then we have to wait to find out if she has all donor cells or not- that won't be a fun wait. All the signs (fever, rash, oxygen issues) point to a successful transplant but we won't be sure until we get those results.

Jessie did experience a fair amount of bone pain today. With her bone marrow so active, it is not surprising. Unfortunately, narcotics do not do a very good job combating bone pain. She is taking Tylenol but she has also decided that she has had it with oral meds! She is usually so good about taking oral meds but, for whatever reason, she has had it! She has sprayed Tylenol all over me on a few occasions now.

Jessie has started to be weaned from her IV blood pressure medicine and should start to be weaned from the steroids over the next couple days. It would be great if she started eating so that she could be discharged without her IV nutrition but this is not a prerequisite for discharge.

Thank you for your continued prayers and for following Jessie's progress! Cari

Sunday, July 10, 2005 6:30 PM (Day +16)

Matt is on his way back to Boston for the week, so it is up to me to do the updates again. Jessie seemed to be mad at Matt when she realized he was getting ready to go. It isn't fair that they have to spend so much time apart while we all go through the most stressful time in our lives!

Jessie is doing great! Her white count is up to 1.0 and her ANC is 450 (which the doc considers the same as yesterday). She seemed to have some stomach discomfort today and they did some tests to make sure there wasn't anything wrong. It is probably a combination of gas pain and bone pain. We know her bone marrow is quite active because her numbers keep going up! She went for a long walk in the hall today- more than twice the distance of yesterday's walk! She has also seemed happier and is smiling a lot more! It is so good to see the Jessie we all know returning!

We are talking a lot about discharge plans but a lot of things still need to happen before she is ready to leave the hospital. It is not simply a matter of her numbers hitting a certain level (which they will probably do before too long). She needs to be weaned from a number of medications that she is currently taking. We are not going to rush her and are just glad that she is doing so well. If there are no setbacks (my fingers are crossed) then we will still have a signifcantly shorter hospital stay than expected!

Hope everyone had a good weekend. Thank you for the continued support! Cari

Saturday, July 9, 2005 4:35 PM EDT (day +15)

Another good day for Jessie! Her white cell count increased to 0.7 (from 0.5 yesterday), and her ANC skyrocketed from 250 to 476! She's in better spirits. She has smiled several times today, and she even let out a little laugh while we were singing silly songs! We're moving in the right direction.

Jessie got her first exercise in about ten days. With the help of a Little Tykes toy walker, she walked up and down the hall. She took a couple breaks along the way, covering about 100 feet in all. We returned to her room afterwards, and she was ready for a nap.

Jessie expressed interest in food today, also for the first time in about ten days. Unfortunately, she didn't eat much-- just two bites of chocolate cake. Nothing looked good to her. This could be due to the sores in her mouth, her lack of taste buds, or both. (Older patients report that losing your taste buds from chemo doesn't make food have no taste-- it makes all food taste horrible.)

The doctors continue to discuss Jessie's eventual discharge, perhaps as soon as the week of July 18th. We finalized our apartment lease today. So we are preparing logistically for the best-case scenario, while also preparing emotionally for possible setbacks. Jessie is still on IV nutrients, narcotics, steroids, three different antibiotics, two high blood pressure medications, two diuretics, and a variety of other anti-rejection, anti-viral, anti-you-name-it medications. She won't be weaned from all these before discharge, but I'm skeptical that we'll be walking out of here with Jessie in ten days or so. Of course, I'd love to be proved wrong!

Thanks as always for your prayers for Jessie.

Matt

Friday, July 8, 2005 11:05 PM EDT (day +14)

Yesterday was day 13. Today is day 14. Either I got ahead of myself yesterday, or I can't count to 14.

Jessie's white cell count was up to 0.5 today, from 0.3 yesterday. Amazingly, her ANC has skyrocketed to 250, from just 2 a few days ago. We thought this was too good to be true, but the doctors said it makes sense. They are very happy with Jessie's progress.

Jessie is feeling a little more like herself. She still sleeps more than usual and is cranky (probably from the steroids), but she is talking and smiling a little more. She hasn't laughed in a long time, though. I miss her silly laugh!

Cheryl, Jessie's favorite nurse, is back from vacation and taking care of her tonight. She does such a good job!

We hope everyone is having a good weekend! Thanks for your continued prayers.

Matt

Thursday, July 7, 2005 7:10 PM EDT (day +14)

Today has been a good day. Jessie's white blood cell count increased from 0.2 yesterday to 0.3 today. She is feeling much better. Her fever is gone, and she no longer needs supplemental oxygen. Unfortunately, she is still extremely irritable. This could be a side effect from the steroids. It also could be caused by pain in her bones. Bone pain is common at this stage of the recovery process, and the IV painkillers aren't terribly effective at dulling this type of pain.

Jessie left her room for the first time in a week! She went to the play room across the hall to draw. After drawing for ten minutes or so, she was exhausted and asked to come back to her room. She then slept for almost two hours. It was fun while it lasted, though! Cari posted some pictures on the site.

More good news-- the doctor we met with when we first came to North Carolina is back from vacation! We call him "Doctor Paul"-- he is from Bulgaria, and his last name is impossible to pronounce or spell. He takes a special interest in patients with Sanfilippo Syndrome; he probably knows more than anyone else about using stem cell transplants to treat Sanfilippo. Perhaps more imporantly, he has an amazing bedside manner. He is Jessie's favorite doctor ever, and Cari and I like him a lot too.

Doctor Paul is very happy with Jessie's progress. He was optimistic that we would continue to see increasing white cell counts, though he cautioned us there will likely be some days where Jessie's count dips from the prior day's count. The overall trend is what matters.

Doctor Paul also said that if Jessie has no setbacks, we'll start talking in 10 days about preparation for discharge. This blew us away-- as many of you know, we planned to spend 50-60 days after transplant in the hospital, even in a best-case scenario. The prospect of being discharged in two to three weeks is beyond anything we hoped for!! Of course, a lot can happen between now and then, and even when Jessie is discharged she'll be at high risk for infection and graft vs. host disease for a long time. Still, the fact that the doctor even mentioned discharge drove home to us how far Jessie has come in the past couple of weeks.

Our thoughts and prayers today have been with the people of London. I was able to contact the people I know there-- they are all fine. I hope everyone reading this is as fortunate.

Thanks, as always, for your prayers and words of support. We are blessed to have so many amazing friends!

Matt

Wednesday, July 6, 2005 5:25 PM EDT (day +12)

Good news! Yesterday, Jessie's white blood cell count was 0.1. This is the lowest number of cells the test can measure. Today, her count was 0.2. Today's result is more significant than yesterday's. Not only is the number growing, it also confirms the accuracy of yesterday's figure. (If Jessie's count had fallen below 0.1 today, the doctors would suspect that yesterday's result was a fluke.)

If you want to know what 0.1 or 0.2 means in terms of the number of white blood cells Jessie has, you're asking the wrong guy. I do know that a normal kid's count would be somewhere between 4 and 10. There is also a second test (the "Absolute Neutrophil Count," or ANC) that counts white blood cells by type and evaluates the overall strength of the immune system. A normal score on this test is 500; Jessie's score today was 2.

The doctors are careful not to give parents false hope, but they are quite pleased with these results, and with how Jessie is doing in general.

Jessie feels better, but she still is not herself. She needs supplemental oxygen, and she is generally uncomfortable and cranky. There are several reasons for this.

-- Her mucositis is awful. She has sores in her mouth and throat, and probably elsewhere in her digestive tract as well. Her new white cells eventually will fight off the mucositis, but this will take time.

-- She has retained lots of fluids. Even though she hasn't eaten in a week, she weighs three pounds more than she did when she entered the hospital. The doctors think retained fluids are the primary cause of her respiratory issues, and they prescribed additional diuretics to try to get rid of these fluids.

-- Her skin is dry and rashy. She gets Benadryl intravenously, and the steroids and painkillers should help too. Despite all this, she is still itchy and has scratched through her skin in a few places.

-- The steroids can cause irritability and mood changes.

In addition, infection continues to be a major concern. A respiratory technician came today to take a snot sample (not the medical term, I'm sure) to test for possible viral infection. The technician shot saline into Jessie's nostril, then stuck a suction tube up her nose to drain off a sample. It didn't look like fun, and Jessie clearly expressed her displeasure! The fact that Jessie has no nasal congestion made the test all the more difficult. The doctors don't suspect a viral infection, but especially with Jessie's breathing issues, they don't want to overlook anything.

We have received words of support from many of you over the past several days. Thank you so much! Most of all, thank you for your continued prayers for Jessie.

Matt

Tuesday, July 5, 2005 9:15 PM EDT (day +11)

For the first time in over a week, Jessie's overnight blood work showed a measurable number of white blood cells! The doctor cautioned us not to read too much into this, but it is a good sign.

Jessie has had trouble breathing today, especially while she is asleep (which has been most of the time). She had a chest X-ray to rule out any type of respiratory infection. The X-ray was clean, so the doctors suspect Jessie's problems are due to fluid in her lungs. The diuretics she is taking should resolve this in time. Meanwhile, we are watching her oxygen levels closely and giving her supplemental oxygen as needed. The oxygen is delivered by a tube that looks like a vacuum hose, only smaller. We point the tube toward Jessie's nose and mouth. Naturally, she hates this. So far, she has been a good sport, but once she starts getting her energy back, this could become a struggle.

Thanks for your support and your prayers.

Matt

Monday, July 4, 2005 4:45 PM EDT (day +10)

Jessie still doesn't feel well (to put it mildly), but she is doing better today than yesterday. Her temperature dropped as low as 101.5 overnight before rising back to 103-104 by morning, where it has stayed all day. Her mucositis is still bad. She would feel better if she would allow herself to throw up, but she won't do that.

Jessie's rash has spread across virtually her entire body. It's itchy, but the fever and mucositis bother her more than the rash. The doctor now thinks the rash is likely a sign of engraftment, and he prescribed steroids to treat it. Assuming the rash is engraftment-related, the steroids should clear it up. They may also help reduce Jessie's fever.

We will have a lot more days like today (and at least a few like yesterday, or worse) before Jessie begins to turn the corner. We don't know whether Jessie's fever and rash are being caused by the growth of donor cells. And although it appears increasingly clear that Jessie's positive test result last week was a false alarm, infection will continue to be a very serious risk in the weeks and months ahead. Nonetheless, we have gotten our first indication that the transplant process could be working, and that has lifted our spirits. Please continue to pray that this awful ordeal Jessie is enduring will give her a chance to live a better life.

Matt

Sunday, July 3, 2005 4:20 PM EDT (day +9)

The past 24 hours have been tough. Jessie's fever spiked to about 104.5 yesterday evening and has climbed as high as 106 today. Tylenol helps a little, but we can't always get Jessie to take it. (For example, she threw up immediately after her last dose.)

The doctors say the fever will do Jessie no harm. Cari and I believe them, but on a gut level, it's hard to accept. When your child has a fever of 105 or 106 degrees, every bone in your body tells you something is terribly wrong.

Needless to say, Jessie is uncomfortable. The IV painkillers don't treat her fever, but they do seem to make her condition more bearable. The doctors have increased the dosage on these meds twice since this time yesterday. We're told this is typical-- the kids get lots of painkillers to help them through the transplant process. Some of them are still taking methadone when they leave the hospital. I never thought my daughter would become a drug addict before her third birthday, but now it barely fazes me-- we have much bigger worries!

Jessie also has a rash, which doesn't seem to bother her (yet). The doctor thinks it's a reaction to one of the antibiotics she is taking. The nurse thinks it's an early sign of engraftment. It's hard to know who to believe-- the doctor is obviously the expert, but the nurse is also highly knowledgeable and is much closer to Jessie's situation. We obviously hope the nurse is right, but we aren't getting our hopes up.

There is good news to report-- none of Jessie's recent cultures have shown any bacterial growth. Therefore, it seems likely that her positive test result was due to contamination. Nonetheless, she is still getting three different IV antibiotics as a precaution.

Thank you for your prayers. Have a great 4th of July!

Matt

Saturday, July 2, 2005 3:35 PM EDT (day +8)

Jessie slept badly last night and woke with a fever of about 102-103 F. The fever could be a sign that the stem cells are beginning to engraft (great!), it could be an effect of bacterial infection (not so great), or it could just be Jessie's body reacting to the annihilation of her white blood cells. There's no way to know.

The doctor suspects that Jessie doesn't have an infection. (He thinks the test sample was somehow contaminated.) Of course, they're pumping Jessie full of antibiotics just in case. If she does have a bacterial infection, the drugs should take care of it.

Jessie has thrown up several times today, due to her mucositis. It's not medically significant, but it sure makes her uncomfortable.

At home, when Jessie got a cold or an ear infection, she wasn't a great patient. Cari and I worried how Jessie would handle the treatment, which obviously involves sickness and pain far beyond anything Jessie had previously known. I'm happy to say that our worries were needless. Jessie has been incredibly brave!! Of course she's not happy when she's sick or in pain, but when the moment passes, she goes right back to being her usual, happy self. She has been a trooper today-- her only demand has been for lots of extra hugs, which of course we are happy to provide!

We'll probably have a lot more days like today before things start to improve. Every day that goes by without a serious infection is one small step toward our goal of a better life for Jessie! Please pray for Jessie to stay safe, and for those cells to grow!

Matt

Friday, July 1, 2005 7:00 PM (Day +7)

Matt arrived this morning and we immediately decided to give Jessie a haircut (see new pictures). Her hair was falling out all over the bed so it was better to cut it short! The last little bit will probably fall out over the next few days. She does look pretty cute even without the thick hair!

We got our first scare today. One of the many cultures taken this week came back positive for bacteria, gram positive rods to be exact. This culture was taken from one of her central lines earlier in the week when one of the IVs accidentally became diconnected. It will be a couple more days before they know exactly what kind of bacteria it is. They started her on an antibiotic today to treat the possible infection.

Here are a few possibilities. One possibility is that there was a contaminate in the testing procedure and that she does not have the bacteria. Another possibility is that the bacteria is limited to the central line and the antibiotic will knock it out right away. A third possibility is that she does have a bacteria in her bloodstream but it is a kind that is innocuous or the level is so low that she has not gotten sick. The worst possibility is that she does have the bacteria in her bloodstream and just hasn't shown any signs of illness yet. They are doing a retest and we hope that it comes back negative or they find the type of bacteria to be innocuous. In any event, the antibiotic should start to fight any infection right away- we just hope Jessie doesn't get sick! She has had to deal with so much already!

We are glad to be together this weekend and we hope everyone enjoys the holiday weekend. Thank you for the prayers- we feel the strong support! Take care- Cari

Thursday, June 30, 2005 6:55PM Day +6

Hair, hair everywhere! Jessie started to lose her hair today. I brushed big handfuls out and it is looking very thin in the front- but the back still looks like a full head of hair! I think we will shave it tomorrow when Matt arrives!

Jessie's platelet level fell again last night and she received another transfusion at 5 am. She was a bit cranky this morning but much better by this afternoon. She is napping right now and I think she needs to catch-up on the sleep!

Hope everyone is doing well- take care- Cari

Wednesday, June 29, 2005 6:45PM (Day +5)

Not much new to report today. Jessie is doing well. The doctors are amazed that Jessie is still eating even though she has sores in her mouth. She had saltines, of all things, last night! She is getting all of her nutrients by IV so she really doesn't need to eat anything. It would probably be better for her diarrhea if she refrained but how can you say no?

With Jessie feeling better since the chemo, it is easy to forget that she still has many hurdles to overcome. First, there is always the possibility that the new cells will fail to engraft. We will not know until 4-6 weeks from transplant whether the new cells successfully engrafted. Second, there are very serious complications involving the liver and kidneys that are being monitored for constantly. Third, pneumonia can occur anytime during the first few months after transplant (she is on an antibiotic to help prevent this). Fourth, graft v. host disease can occur within the first 12-50 days or up to a year after transplant. She is on medications to help prevent this but it is always a concern. Lastly, we are always on the watch for bacterial, viral, fungal and protozoan infections. With her immune system all but wiped out right now, she is at the greatest risk during these first few months.

These concerns are always in the back of our minds and we know the doctors are watching closely in case she shows signs or symptoms of any of the above. She has already made it through so much and she still has so much more left to go- it can be overwhelming to contemplate. Thank goodness Jessie does such a good job keeping us in the moment!

Thank you to everyone for continuing to follow Jessie's progress! Thank you for the prayers and positive energy through this marathon! Take care- Cari

Tuesday, June 28, 2005 2:26 PM (Day +4)

Jessie is still doing well, although she has started to develop mucositis. As I mentioned before, it is a chemo side effect that is not serious but it is pretty painful. She has a few sores in her mouth and probably more in her throat. They have switched her to continuous pain medication with the pump so that I can still give her some extra for diaper changes. This has seemed to help.

Jessie's platelet count dropped overnight, so early this morning she was given a platelet transfusion. About an hour after the transfusion, she turned bright red like a little tomato. She was given some Benadryl and it cleared right up (it also made her so tired she slept for 2 hours). Her other bloodwork is exactly what we would expect. Her white blood cell count is still extremely low (almost nonexistent) and her other functions are fine (liver, kidney etc). We are just playing the waiting game!

Over the weekend, we thought Jessie was starting to understand the idea that her little brother was growing inside my tummy. She would pat my tummy and say "baby." But we were mistaken. She now pulls up her shirt and pats her tummy and says "baby" as well. I guess we still have a way to go before she gets the concept!

Thank you to everyone who has sent a card or gift for Jessie. A special thank you to the kids of NHCC for sending great artwork for Jessie's walls! It is so nice to see all the support for Jessie! Take care- Cari

Sunday, June 26, 2005 6:20 PM (Day +2)

Once again, Matt has left for the airport to fly home for the week. We had such a great weekend, I know it was really hard for him to leave. Jessie had another great day today. She ran up and down the hall with her cart, played with her little people, listened to the Red Sox sweep the Phillies and played in the tub. She is starting to feel better and even her diaper rash looks like it might be starting to heal instead of getting worse each day!

Jessie's white blood cell count is still falling. Today it was .2. It should hit .1 in the next day or so and then it needs to remain low for a couple weeks to allow the new cells time to do their work. If her count goes up too soon, it means her body is attacking the new cells and she will probably need more chemo- yuck! After a couple weeks, the count may slowly start to go up and then a test will be done to see if the new cells are from the donor cells or from her own. Of course, we hope for 100% donor cells! Until then, Jessie's temp will be monitored closely. If she gets even the slightest fever, they will assume there is an infection and treat it with antibiotics. The culture takes a couple days to come back and in that time, a child with an infection can get very sick. If the culture does come back negative, then the antibiotics will be discontinued. Her liver and kidney functions will also be monitored closely. We are also watching for signs of mucositis (a chemo side effect). This can cause sores to develop throughout the digestive system. It is not serious but it is very painful and we clean her mouth thoroughly several times a day to help prevent sores from developing in her mouth.

On a final note, if I haven't mentioned it previously, I meant to. The nurses here are amazing. I was so concerned Jessie would become shy and withdrawn from all the procedures but it has been just the opposite! Jessie loves all of her nurses and I can understand why. The nurses are all such great people and Jessie has really enjoyed getting to know them- I know she feels like they are her special friends! I know we still have a long road ahead but it is definitely easier when you are surrounded by great people!

I hope everyone had a great weekend. Thank you for all the special thoughts and prayers for Jessie's big day! Take care- Cari

Saturday, June 25, 2005 5:50 PM EDT (1st day after transplant)

Here on the transplant unit, time is measured for each patient by reference to her transplant date. So for us, today is Day One.

Jessie has had a great day-- her best in at least a week. She got a good night's sleep and also took a 2 1/2 hour nap. She has run up and down the hall with her push cart, played with her toys, talked nonstop, and demanded lots and lots of hugs! Her diaper rash even looks better, though it's still awfully raw.

Most surprising of all, Jessie has been eating and drinking-- not nearly as much as usual, but much more than just a bite or two. She asks for her favorite foods, then looks puzzled when they don't taste like she expects them to taste. Her nurse explained that most kids lose their taste buds during chemo. (They grow back.) For some reason, though, Jessie loved the homemade chocolate brownies she had today. I guess her special chocolate taste buds somehow survived the onslaught!

Cari posted photos of transplant day on the site-- check them out!

We thank God for this happy day, even as we know that many hard days lay ahead. Thank you all for your support and your prayers.

Matt

Friday, June 24, 2005 5:40 PM EDT (transplant day)

Jessie received her transplant between noon and 12:30 today. We decorated her room (OK, just a few streamers) to celebrate the occasion.

For such a landmark event, the transplant is a simple procedure. It's just a blood transfusion, and with Jessie's central line, she likely noticed no difference between the cord blood and the dozens of other infusions she gets in the course of a typical day.

For me at least, the transplant was a reminder of the hope this process offers-- the hope that brought us here. Thank
God for hope!!

We are deeply grateful for the messages of support and encouragement today! It means the world to us that so many of you are thinking of and praying for Jessie.

---------------------------

Jessie is now receiving nutrients intravenously. They call it TPN-- those of you who have medical training may know what that means. This is standard.

Overall, Jessie is doing well, under the circumstances. Unfortunately, her diaper rash is AWFUL. I know Cari has mentioned this, but she hasn't done it justice. Some of my family and friends may remember that I burned my hand many years ago in a factory accident-- that's what the rash looks like, except without the blisters. The poor kid needs a morphine drip to control the pain. (Technically, the drug is fentanyl, not morphine, but you get the idea.)

Jessie's hair is very dry. It probably will fall out in the next week or so. Fortunately, she's not old enough to be self-conscious about being bald.

Please continue to pray for Jessie.

Matt

Thursday, June 23, 2005 7:43 PM (day before transplant)

What started out as a good night did not end well last night. By 2am Jessie had a temp of 103 and at 3am she had another episode of vomiting. To make matters worse, she was in serious pain today due to her diaper rash. After the doctors did rounds, they ordered a morphine pump for her. I can give her a dose when she is in pain or before I change her diaper so that she is not in so much pain. She is much better now. She is in the middle of her last dose of ATG- thank goodness!

I decided, after several of her nurses recommended, to get her a bed instead of the crib. I think she was feeling isolated in the crib and we have had lots of time for hugs and snuggles since the bed arrived. I think it was a good decision even if it means I have to keep a closer eye on her.

Matt is currently en route somewhere over Baltimore. It will be so good to see him. We are going to celebrate a little tomorrow for Jessie's transplant. She has made it so far already! I know we still have a long road ahead but we should celebrate the little milestones along the way.

Thanks for the special prayers for tomorrow! Cari

Wednesday, June 22, 2005 8:00 PM (2 days pre-transplant)

Jessie had a hard time with her first dose of ATG yesterday. She developed a fever of 104 degrees and had an episode of vomiting in the middle of the night. By morning, she was resting comfortably and was able to catch up on some sleep. Her temp returned to normal and the nausea seems to have subsided. She had her last dose of chemo today and tomorrow is her last dose of ATG (which is an immune suppressant but not technically chemo). She is currently getting her second dose of ATG and the fever and nausea that she experienced with it yesterday have not returned- I am keeping my fingers crossed! She still has severe diarrhea that has left her bum raw but I guess it could be worse.

Her favorite nurse is on again tonight and Jessie greeted her with her "swimming" routine- which consists of pretending to swim in her bed. I guess the Jessie we all know is back, at least for the time being. She is watching Wiggles and playing with Curious George. At the moment, George is getting to slide down one of her bedposts. I think Jessie really misses the slide at the gym!

Friday is the big day and we hope that she is able to accept the new cells and begin reproducing new "healthy" cells. Her white blood cell count is falling and she has started a new drug to prevent her from attacking the new cells she will get on Friday. So it will be a bit of a wait and see over the next couple weeks to see if the new cells take over.

I am hoping for an uneventful night- things look promising right now. Hope everyone is doing well- take care- Cari

Tuesday, June 21, 2005 7:05 PM (3 days pre-transplant)

It has been a hard couple days for Jessie. Her nausea subsided last night only to have her hemoglobin drop and by 3am this morning she needed a blood transfusion. She had a bit of a restless morning and then the ATG started at 2pm. They only start the ATG when the doctor is on the floor because some patients have a strong reaction that causes a severe drop in blood pressure. Jessie's blood pressure has dropped slightly but nothing concerning. She has experienced a new episode of nausea that has made her pretty uncomfortable. Her temp has started to climb and the doctor said to expect a fever (with or without a rash) about 6 hours after the ATG is started. The fever could be as high as 105-106 degrees and can be accompanied by severe chills. I just put a blanket on her because I noticed she had goosebumps. She is sleeping right now and I think the meds they have her on every 4 hours will cause continued drowsiness. It doesn't seem like restful sleep to me because she still cries every few minutes. Poor kid. I hope this passes relatively fast.

Thanks for continued prayers and thoughts for Jessie- take care- Cari

Sunday, June 19, 2005 4:53 PM Happy Father's Day

Matt just left for the airport to fly home. It is going to be a hard 4 days for us until he returns.

Jessie slept well last night but awoke sick to her stomach. She has been vomiting all day despite their best efforts to calm her stomach. The doctor is sure that it is due to the medications but they did a culture just in case she caught a bug. Her bloodwork shows that her hemoglobin and white blood cell counts are starting to drop. If her hemoglobin drops too far, they will give her a transfusion.

Jessie is napping right now and I am listening to the Red Sox game on the satellite radio Matt got me for Mother's Day. Go Sox!!

I hope everyone had a good Father's Day! Thanks for the continued thoughts and prayers! Cari

Saturday, June 18, 2005 2:51 PM (6 days pre-transplant)

Jessie has had a pretty low key day. I arrived at the hospital at 8am to find out that she had been awake since 3:30. I think it was a combination of having dad stay overnight with her for the first time and having her favorite nurse on for the night shift. She napped from 10-1, so I hope she is back on schedule for tonight! She spiked a low-grade fever last night, so they have her on another antibiotic as a precaution.

She went for a short walk in the hall and wasn't interested in doing any artwork today. We had to change to a new, more protective mask today and I think that was the reason for her lack of enthusiasm. She has to wear a mask when she leaves her room to protect her from germs.

Today is her last day of the first chemo drug, Busulfan. She starts the second chemo drug tomorrow, Cytoxin. Her bloodwork is still normal but the doctor told us that it probably won't start to drop until half way through the Cytoxin, which will probably happen early next week. The final drug, ATG, will completely suppress her immune system. She gets this the last 3 days before transplant, which is scheduled for Friday. We hope that she continues to tolerate everything as well as she has this week.

Hope everyone is enjoying the weekend- take care- Cari

Friday, June 17, 2005 8:00 PM EDT

Jessie has had a good day. She did lots of fun stuff-- playing with her toys, walking up and down the hall, reading, and coloring. She also had visits from a speech therapist and her "best buddy" (a volunteer named Tory, who comes by a few times a week to play with Jessie so Cari can get some rest). Jessie loves to have people come play with her! Our biggest challenge today has been dealing with Jessie's frustration; she doesn't like being confined to her bed. I'm not complaining-- we'll enjoy this for as long as it lasts!

Matt

Thursday, June 16, 2005 6:45 PM EDT (8 days until transplant)

We just got sad news-- a young boy on the unit passed away a couple hours ago. His name was Tyler. Please pray for his family.

Jessie is less comfortable today than yesterday. She developed diarrhea this morning, which is metallic green in color. The nurse told Cari to wear gloves when she changes Jessie to protect herself from the chemicals in the chemo. That seemed logical-- after all, she is pregnant. However, when the nurse told me I should also wear gloves to change Jessie, that freaked me out a bit. What kind of awful stuff are they giving her??

Some of Jessie's blood work suggests she might have a hypoactive thyroid. They are doing more tests. If she does have a hypoactive thyroid, they can treat the problem fairly easily with medication -- her MPS doesn't make it more difficult to treat.

Jessie is still the same happy kid. The doctors are surprised she has so much energy! She has read about a hundred books today. Well, not really-- more like the same five books twenty times each. She has also played with some of her toys, but her new, favorite toy in the world is the little light the doctors use to look in her eyes and ears. It sits on a rack just above the head of her bed, and Jessie asks for it every 30 seconds (or at least it seems that way). She also loves to look through her little album with photos of her friends and family. She is getting very good at naming people! (She is also good at naming her dogs-- she misses them.)

Happy Birthday Uncle Ron!!

Matt

Wednesday, June 15, 2005 5:45 PM EDT (9 days before transplant)

Cari taught me how to use this site, so I can post updates too.

Jessie has fully recovered from her surgery on Monday. They transferred her to the transplant unit about this time yesterday. She was really freaked out at first. (I can't blame her; this place is creepy.) After a few hours, however, she has settled in nicely.

Jessie began chemo at 4:00 this morning. So far, she is no worse for wear. This is a good sign; the doctor said some kids start having diarrhea almost immediately. We aren't reading too much into this, though-- the worst side effects from the chemo have a delayed onset, and they won't even start giving her the really nasty stuff for several more days.

Cari is doing an amazing job. She's my hero. I don't know how she is functioning at all with so little sleep. The nurses had to check on Jessie every hour last night, and because Cari is a light sleeper, she woke up every time. (Jessie, on the other hand, slept through most of the checks-- even the blood draws from her central line!)

Thanks to everyone who is praying for Jessie and who has sent us their best wishes. We are profoundly grateful for your support!

Matt

Monday, June 13, 2005 3:55 PM

They successfully placed Jessie's central lines this morning and did the spinal tap to check the pressure on her brain. Everything went fine. Jessie was a bit sick to her stomach when she woke up in recovery but is doing better now. Matt flew back down this morning and was with her in the Children's unit when I left to come back to the hotel to do some laundry. They were able to admit her but she will be transferred to the transplant unit tomorrow when a bed opens. She was eating crackers and watching her new Clifford videos (a gift from Ingrid and Hannah) when I left. She is really an amazing kid! She has 2 lines coming out of her chest now and she is quite curious about what they are for but she has not been inclined to pull on them yet. Tomorrow will most likely be her first day of chemo- a bit scary but I am glad the process is underway.

Take care and thank you for all the thoughts and prayers- Cari

Saturday, June 11, 2005 8:43 AM

Well, we still don't know if a bed will be available for Jessie on Monday but they are going ahead with her surgery to place the central lines. They are hopeful that something will open up soon and that I won't have to care for the lines for too long. The waiting is really starting to get to me!

It has been hot and humid here the last week! Matt arrived yesterday afternoon and we are taking a trip down to Wilmington for the day today. It will be nice to make it to the coast at least once! I will update again when we know if a bed is available. Hope everyone has a great weekend- Cari

Tuesday, June 7, 2005 9:11 AM

We met with Jessie's doctor last night to sign the consent forms for the transplant. We also got a tour of the transplant unit and it was a very sobering experience. They now think a bed will be available on Monday, so they are planning to reschedule the surgery to place her central lines for Monday morning. I am a bit relieved that I won't have to take care of them over the weekend.

I'm not sure everyone knows but we are expecting a healthy new baby boy the beginning of October. I had a check-up yesterday and everything seems good. We had an amnio and the baby does not have MPS. It is hard to focus on the pregnancy with everything going on with Jessie but we are excited that Jessie will have a younger sibling waiting to play when she is feeling better!

Take care- Cari

Thursday, June 2, 2005 12:29 PM

UPDATE

We just found out that the bed that was reserved for Jessie will not be available on Tuesday so everything will be pushed back a week. I think this is a regular occurrence. It is hard to predict when a child will be ready for discharge so we just have to wait until a child is ready to go home. Right now she is scheduled for June 14. It is a small wrench in the plans but we'll live!

Cari

Wednesday, June 1, 2005 4:42 PM

Today was a better day. Jessie had her CT scan and is still napping after being quite groggy from the sedation. They were able to get the rest of the blood they needed, so she is done with needles for the week! I am apartment hunting when I can- the rest will be left up to Matt!

Looking forward to the summer weather they are predicting for the weekend- that and all being together again for the last weekend before Jessie is admitted.

Take care- Cari

Tuesday, May 31, 2005 8:31 PM

We made it to Duke yesterday afternoon after an uneventful trip. Jessie has become such a good traveler. I think she almost enjoys the trip! We dropped Matt at the airport last night so that he could put in a week of work back home. We miss him already.

The first day of testing is behind us. It was a tough day for Jessie. Anytime she has to have blood drawn, it is a hard time. They had to draw enough blood to run 29 different tests! After being stuck 4 times, they had enough blood for all but 3 vials and they decided to get those another day. She is alseep early tonight and I hope she gets a good night of sleep! Tomorrow is the CT scan but I think it will be less traumatic.

Thanks to everyone who posted on the website guestbook! It is great to see so much support for Jessie!

Cari

Saturday, May 21, 2005

Jessie is recovering on schedule from her tonsillectomy. We are leaving for Duke over Memorial Day weekend with Jessie starting her pre-transplant work-up on May 31. The chemo will begin the following week. After 8 days of chemo, Jessie will receive her stem cell transplant. I will try to keep everyone updated on her progress through this website.

Thank you to all of our friends and family that have provided us with support and Jessie with prayers!

Cari

Click here to go back to the main page.

----End of History----