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Tuesday, June 20th--

5:00pm--When Allie was sick, I was amazed at how people who never met her were drawn to her.  I marveled at how people checked this site for her health updates and continue to do so.  Extremely touched, but still puzzled at times. I remember Dana and I having this conversation more than once. About a year ago, the two of us found the site of Amazing Jacob Duckworth.  It all made a sense then.  I check on other kiddos, but I become hooked on sweet Jacob.  Something about his blond hair and wise, beautiful, blue eyes that reminded me of Allie.  According to the doctors and all known medicine, Jacob should have passed many times.  Dana always said he was like a little cat--nine lives and then some!  Each time he landed PICU in critical condition, Jacob displayed more strength than most grown men.  With amazing dignity and strength, his family remained at his side.  His three brothers (Jacob is a triplet and they have an older brother too--a very busy household!) brought sunshine into the hospital world.  Every person that visited Jacob's website and saw the pictures of smiling blond boys saw an insurmountable amount of love shining through the web. 

Sadly, Jacob passed away last week.  For a week now, I have come to this website to write my feelings.  For a week, I have fallen short and not completed the task.  I have thought about Heather, Jacob's mom, every day.  Friday night, I dreamed of flying to Florida to meet Jacob.  I realize now it was because Jacob's service was on Saturday.  There is an image I cannot get out of my head--a picture of Jacob and his three brothers all intertwined, legs, arms all mixed together. Nothing but smiles on their beautiful faces.  I have never seen a happier group of children. 

What draws me to that site besides Jacob is his mother.  Her faith--as amazing as she describes Jacob and his strength, her faith is just as amazing.  In tragedy, some turn to God for strength.  Many, like me, turn away.  I lost my faith after Allie died.  Maybe it wasn't strong to begin with.  I don't know and I don't know how or if I will get it back (as I have asked before on this site, please reserve your comments and judgements--this is an internal struggle and journey for me).  But Heather--she knows what she believes, and she finds comfort and strength in that.  I admire her.  I admire her greatly.  Heather has the ability to take this terrible tragedy and turn it into one of her greatest strengths.  Her faith in God and love for her family inspires so many.  Whatever she chooses to do with this new point in her life, I know it will be done well.  She will honor Jacob's memory in all that she does. 

The cancer community was all deeply affected by Jacob's death.  I know that I will always remember him, even though I never met him.  While we in the cancer community were saddened by Jacob's life, we were also thrilled to hear of the birth of beautiful baby Jacob (what a coincidence!), Hayley's new baby brother.  Hayley passed several months after sweet Allie of the same awful cancer.  I am so happy for her parents and the sweet baby brother.  I know what they are experiencing--feeling an incredible amount of love for a new child while feeling an incredible loss for the other at the very same time.  Congratulations, Dayna and Alan!  I wish you many moments of love and happiness for MANY MANY years to come!

In our world.....

Maggie is wonderful!  HEALTHY and happy--what more could I ask for?  She's sweet and fun and so loving.  Andrew and I spend our nights in our playroom, going on walks with the dogs, and loving on Maggie.  Three weeks ago, life changed in our household when Maggie got on the move!  She can crawl! Woohoo!  Last week, she learned to pull up.  Debbie jokes that I need to knock her back down!  Of course, I won't do that because I am too excited about this stage.  Oh, how fun this is.  The other day, she crossed the room to me, grabbed my shoulders and pulled up on me, only to land in my arms with a squeal and a smile.  I couldn't help it--the overwhelming joy I felt in my heart brought a few tears.  It was such a special moment for the two of us.  It made me think of all the moments I want to have with this beautiful child in the future.  Hugs?  Bring them on!  I'll take the hugs, kisses, and even tantrums in the future so long as it is spent with her. 

Maggie brings such joy to my life--can you tell? 

Eating is not her strong point.  We've been working on it, but she doesn't care for baby food at all.  We decided to follow our pediatrician's advice and wait for solids until then.  For the first three weeks or so, she ate ok.  Maybe once a day about a jar at a time.  She never opened wide for food, but she at least accepted it.  Now, she spits it out.  Blows raspberries at you with a mouthful of green beans!  If you trick her to smile, she will eat a little (at most half a jar) but not much.  If she begins to cry, I stop.  I don't want to make it a negative experience.  She does like veggie and fruit puffs--well, the few that actually make it into her mouth and not the dog's!  This week, I started to try different foods that she could eat.  We did diced pears (a no go) and real green beans (she ate a few but put the majority in her hair!).  I've been searching to figure out what to do for her--try real foods, stop all together and try again in a few weeks, etc?  Tonight, we were having rotisserie chicken and stove top dressing.  She loved it!  She actually ate and opened up for bites!  So, not a baby food baby, more of a chicken and Stove Top girl!

Today we got even more great news about Andrew's bone marrow donation.  When he went to a preliminary meeting last week, he asked if it was possible to have the procedure at Medical City with one of Allie's doctors.  We found out today that he can!  The surgery is set for July and assisting in the procedure will be none other than Allie's beloved Dr. Goldman!!  Oh, this just makes it feel so right.  We don't know much information about the recipient--simply that he is male, nine years old with neuroblastoma, and in the US.  If he chooses, Andrew can send a card wishing the family well so long as it doesn't contain any of our information.  They also said we can send a gift if we like, so we are discussing it.  I can't tell you how proud of Andrew I am.  I've said many times that he is my rock.  He truly is my strength and what grounds me.  I look to him for every decision I make in my life because I respect him so unconditionally.  For him to give so selflessly like this to a stranger makes him a hero in my eyes.  He doesn't like me to say  that to him, just shrugs it off and says "haven't done anything yet, just have good blood."  Did I mention that he is a PERFECT match for this child??  6 out of 6!  What Andrew doesn't see is that many people, maybe I am generalizing but I think many men, would not do what he is doing.  To go through pain for a complete stranger, that is a sacrifice.  Would he have done it more than two years ago when we didn't know what bone marrow even is?  I don't know.  I do think he would help anyone in need if he felt it was right.  I know he believes this is right.  Like I said before, Allie continues to send us signs that it is.  Getting approval for Medical City and Dr. Goldman is even one more affirmation that this is the right thing for him.

This morning, Maggie and I delivered a laptop to a social worker to Medical City through our Laptops for Love program with Heroes for Children.  While there, I couldn't resist the pull of 12 South.  Only two nurses were there that knew us, but it was great to see them.  It felt good to know that the only reason we were sitting in that visiting room was because we were just visitors.  That's because our daughter does not and will NOT EVER HAVE CANCER!  Do you think if I say it enough I will be convinced and relax?

The rest of our summer is going to be spent with our girl, with the exception of one week.  I am returning for my second year at Camp Discovery in July as a volunteer.  As difficult as it will be to pull myself away from that sweetness of a child I have, I am excited about going back to camp.  I had such an experience last summer that I couldn't turn down the opportunity to return.  Maggie will be spoiled rotten while I am gone too!  Andrew and his friend John are taking a "guy's trip" to California to go up through the Redwoods and hiking in Yosemite.  Both the grandmas are making camp at our house, dividing the week between them to shower little miss with lots of love and so much attention!  It'll take me a while to unspoil her!  Well, wait a minute--she is spoiled already! 

It's time for me to head to bed.  New pictures of Maggie below!

--Jenny

Our little model	Playing with sweet boyfriend Luke--they now have the same babysitter, so they see each other all the time!
Not sure what to make of the suit and hat for her first time in the pool--by the way, she loved it!!	Maggie's new funny face--she learned how to blow air out of her nose.  Notice the two teeth??
Crawling!!	A banished Brandy--she wants in so bad, but I have to kick her out sometimes to give me some peace!

Tuesday, May 30th--

BIG NEWS!!!

ANDREW IS A BONE MARROW MATCH!

Tonight, I answered the phone to hear this AMAZING news!  After further testing of Andrew's blood, it was determined that he was a good match for a nine year old child with neuroblastoma.  We don't know any details about the child (location, name, sex, etc) but that isn't important. 

When I heard the woman on the phone tell me, I immediately felt tears stream down my face.  Tears of joy, of course,  My daughter, I know is talking to me.  She is showing me that what happened to her WAS for a reason--it was for us to carry on her legacy in her name and help other families.  That is what I feel I do each day with Heroes for Children.  It is exactly what will happen with Andrew when he donates. 

Another way I know Allie is communicating to us?  Be prepared for chills--I asked the rep on the phone when the donation would be--they have two potential dates in mind--July 10th or July 17th.  Well, for those of you that followed Allie from the beginning, that might spark a memory. Allie had a stem cell transplant from an unrelated donor (cord blood) on July 17, 2004.   Exactly two years.  Now, how can I not believe Allie isn't trying to communicate with us?

We are actually hoping for July 10th because I will be gone at Camp Discovery, a camp for children ages 7-16 with cancer from July 15-22.  The grandmas have Maggie duty and Andrew is hoping to go out of town with his friend.  I know it is a minor procedure for the donor (shoot, Ethan was swimming the next day after donating for Sam!), but I want to be there by his side.  I want to be there beaming with pride for my hero, my husband. 

Andrew has the chance to potentially save a life. We have the opportunity to give back to another family. Because someone gave their child’s cord blood to Duke University, we had that same chance and hope. And, we have 58 more days with Allie after her transplant. Those days are some of the most precious days of my life. How full circle is this?
 

Monday, May 15th--

7:00pm--I'm sitting on the floor in my new favorite room of my house--our playroom!  Maggie is mobile!  She can't crawl forwards, but man you should see her go in reverse!  That's right, the genius child goes backwards.  It's quite a fun thing to watch.  She can also sit completely unassisted, almost can pull her self upright on her own (yes, we did drop the crib already), can get up on her hands and knees and rock, and even get up on her feet and hands and do a one handed push up style move!  That one really gets me!  She now eats solids twice a day and is cutting her first tooth.  We've moved her out of the infant carrier because she is too tall and her whole feet were dangling off the sides.  My baby is growing! 

All of this is so exciting to me and Andrew.  We spend the majority of our evenings here in the playroom on the floor, watching the baby and a little TV (ok, we may watch a little too much TV--love that Tivo!).  Being with Maggie is the best part of each and every day. 

I still work from home on Tuesdays and Thursdays, but I can't say a lot of work gets done during the awake hours.  For that reason and because the amount of work is rapidly rising for Heroes for Children, Larissa and I are moving to five days a week beginning in August.  Since summer months are slower in the nonprofit world (everyone's on vacation and not donating as much), we want to maintain our schedule in the summer. Hopefully, this will be true each summer.  That's my hope at least.  I'm good with this decision.  Yes, I will lose that time with her. However, I feel guilty when I am with her and focusing on my work.  I feel bad when I say "hang on, baby, just let mama finish this email" when she is fussing on the floor.  I would rather focus my energy at work during the day, get my job done, and focus my full energy on my family in the evening.  Yes, there will still be evening work with my job.  But, there is enough flexibility that I will be able to maybe stay home in the mornings when I can on those days.  I will still be able to take the occassional playdate and such. 

Let's see, so much has happened in the past few weeks since I last posted.  I don't know where to start!  Let's go back to two weeks ago...

Andrew got a phone call that he is a potential bone marrow match for a nine year old boy with neuroblastoma (a type of childhood cancer)!  We were so excited!  The two of us registered to be bone marrow donors on Allie's first birthday, sort of our gift to honor her.  The next step was further testing and bloodwork.  Andrew went to the local Carter Blood Care center and had over 7 vials of blood drawn.  They told him it may be 2-3 weeks before we hear any news as to whether or not he really is a good match.  Often, further testing determines that the person isn't quite as good as they thought.  Personally, I really, really hope he is a match!  What a gift he would be able to give.  While having a transplant most certainly doesn't mean getting a cure (don't we know that), it does mean the chance at life.  As Dana says, it would truly be coming full circle for our family to give the opportunity of life to another.  Several years ago, a mother delivering her son at Duke University gave that same opportunity to our family when she opted to donate her child's cord blood.  While it didn't pan out the way we hope, it did give us 58 more days with our girl.  As soon as we know one way or another, I will post about it.

In the same week, Maggie got her first fever.  I in turn had a meltdown.  The fever started on a Tuesday night.  By Wednesday around noon, I was calling the doctor's office, ready for bloodwork.  The nurse on the phone was trying to explain to me that a fever was alright and no need for a visit.  I frantically through my tears said,  "you don't understand--this is my daughter's fever.  My other daughter had her first fever and it turned out to be cancer, and she DIED!" Sobbing began.  Heart pounding, fear building--you get the idea. The nurse, a bit taken back, asked, "Ma'am, would you feel better if you saw the doctor?"  YES!!  Dr. Katz doesn't work on Wednesdays, so we had to see Dr. McDonald at 4:30.  I called Andrew and reported that we had an appointment scheduled.  Knowing me well enough, he asked, "was this appointment schedule before or after you freaked out?"  After, of course. 

The appointment was really upsetting to Andrew.  He said it brought up too many memories--Allie's apt had been with Dr. McDonald at 4:30 on that final apt before being admitted to the PICU.  I think he really struggled with going.  I struggled too, but I still felt we needed to go.  That is until I realized the date.  It was Wednesday May 3rd.  That was two years to the day that Allie had that final apt--Allie's apt was at 4:30 with Dr. McDonald on May 3rd.  No way on God's green earth that I was going to let Maggie have an apt at 4:30 with Dr. McDonald on May 3rd!  Once I realized it, I quickly cancelled the appointment.  The same poor nurse I had just flipped out on about having to see the doctor, I was now telling I need to NOT see the doctor!  Poor woman!  Unless that child has lost a limb, I don't ever want to take another child to the doctor on May 3rd.  Not just no--but HELL NO!

We did end up seeing Dr. Katz the following morning.  Maggie's temperature continued to spike and got as high as 102.8.  I desperately needed to see the blood results to know she was fine.  In my mind, I knew that logically she was ok.  The two of us went through all of Allie's symptoms and knew that was not what we were seeing.  Maggie was still smiling and playing.  She could be on her tummy and legs were fine.  Right before diagnosis, you couldn't touch Allie's legs.  My mind knew, but my heart needed a little bit more convincing.  My heart is still extremely sensitive.  A fever was most definitely the trigger. 

As we all knew, she was fine.  She had a sinus infection!  Makes sense since she has such allergy issues.  A few doses of amoxicillin (which also had me worried since Allie was severely allergic to anything in the "cillin" family), and Maggie was feeling great!  Andrew and I were amazed--it was the first time we had given a drug to our child and it worked!  I don't know that I can describe that feeling.  I don't know that it is easily understood by people who haven't watched every since drug and treatment on their child fail, and fail miserably. 

While I knew that I would freak when Maggie first got sick, I don't  think I thought just how it would hit Andrew.  It hit him hard.  Bad.  He is always the strong silent person in our family.  No one has ever described me as the silent one!  But, he internalizes his feelings.  Both days she was sick, he was at work.  Between the phone and instant message, I heard from Andrew every hour.  He rushed home as fast as he could.  Just solidifies it--she is definitely a daddy's girl!

I started this post at 7, but it is now 10:35!  Sitting on the floor earlier tonight I realized I was choosing typing on this computer over playing on the floor with my girl!  I was writing about how much I loved to play with her, but I wasn't actually doing it---now, that just couldn't work!

Maggie's photo shoot with Jennifer isn't in yet, but I know they are going to be great!  If you haven't check out the sneak peek already, be sure to scroll down to see the picture below.  Those eyes are just too gorgeous!

I had a wonderful Mother's Day!  No question what the best gift I got was---MAGGIE!!  She is alive and HEALTHY!  She is with us, developing like a normal child, here for me to love on each day.  And that is what I try to spend the majority of my time doing--loving on my sweet baby.  Saturday night, Andrew and I had a date!  Mom watched her overnight with my Mom Mom (my mom's mom who just recently moved in with my mom.  I love having her here in Texas!).  This is actually Maggie's third sleepover at her Grandmas.  She loves it, and I know my mom does too.  Andrew and I went out to an early dinner at a great sushi restaurant, Naan, and then went to see the movie Poseidon.  It was so nice to just spend quality time with just the two of us.  Mother's Day is made more special because I have an amazing partner by my side helping me raise our child with so much love.  The next morning, I woke up to hearing Andrew cooking in the kitchen.  After breakfast, I got my gift--a new photo charm from www.planetjill.com!  It now hangs around my neck with my Allie charm.  I love it so much!  We went out to lunch with my mom and "Mom Mom," and then Andrew, Maggie and I spent the rest of the great Mother's Day at home together.  All in all, it was a happy day. 

Can I just tell you how much I love my family?? 

That's it for now. 

Jenny

Friday, May 12th--

8:30am--Well, my friend and HFC assistant, Cheryl, informed me last night that I needed to post.  Unfortunately, I just don't have the time this morning to do a full post--so much to write about!--but I did what to share a picture.  Maggie had her six month portraits with Jennifer Weintraub on Sunday.  Our smiley girl flat out refused to smile!  We couldn't believe it.  I have not seen the entire session yet, probably not for another week or so, but Jennifer sent me a sneak peek last night.  Are you ready?

Did you gasp like I did when I saw it last night?  I know she's mine, but let me just say that kid is freaking gorgeous!!

Well, while the gorgeous kid is still asleep, I should finish getting ready for work (yes, it is 8:30 and she is still asleep--Of course, we don't put her down until 10:30, but this is exactly why--I'm NOT a morning person!). 

Hope you all have a wonderful weekend.  Happy Mother's Day!

Jenny

I promise a full post by the end of the weekend!

Wednesday, April 26th--

11:00pm--There is no denying that our girls are sisters.  Both of these pictures above were taken on the day they turned six months.  For Maggie, that's today!  Obviously, it is easy to tell who is who.  Maggie is still significantly smaller than Allie ever was! 

I know for sure that is when Allie's picture was taken.  I bought her that dress the day before she was diagnosed with cancer.  At that point, she was wearing hospital gowns all day.  On the day she turned six months, I decided she would wear a "party dress!"  I proudly dressed her in that dress, raised her blinds to her hospital door, and let everyone look in to see her.  Everyone was commenting on how gorgeous she looked.  It was one of the best days I've ever spent with Allie.  Never in my life will I forget the joy I felt that day with my precious baby.  It was after her second round of chemo and just days before the infection that threatened to take her life.  Luckily, we beat the infection and had her three more wonderful months.  It was a day I felt hope for my daughter.

Today, I feel hope for my daughter, but a different kind.  It isn't a hope that she will beat a deadly disease.  It is a hope that she will have a wonderful, fulfilling, happy future ahead of her.  It is the hope that she will do everything her sister never got to do and appreciate it. 

We were playing with Maggie tonight when all of a sudden I got quiet.  A realization hit me that at Maggie's next check up, she will be older than Allie ever made it to.  She will be nine months.  Up to this point, I have been able to say, "well, when Allie was this age she...."  I'm not comparing them in a negative way--its more about what size they are, what they liked to do, or now at this point it's where Allie was in her treatment.  It baffles me that when Allie was the exact age that Maggie is now, she had already finished her second round of intense chemotherapy and a dose of myelotarg.  Did that REALLY happen???  My God, she was just a baby!  I will never in my life understand all that happened.

At Maggie's appointment yesterday, I seriously contemplated having a full CBC run.  Andrew and I discussed it in detail the night before.  Was it necessary?  Probably not.  They would be detecting it only if she had it right then.  It doesn't determine likelihood of it occurring.  All it would really do is cause Maggie undue hurt from the needle stick.  Dr. Katz told me that he does full blood work ups at nine months for all his patients.  Since she doesn't have a fever (don't care how old she is, she will have a blood test then!), we decided to go ahead and forego the test.  It would have done nothing but ease my heart.  As Dana says, "there is NOTHING wrong with that baby!" 

Maggie is still the peanut of our girls (as you can tell by the above pictures!).  She weighed in at 16 lbs 9 oz.  That puts her in the 75th percentile for her weight.  Allie was never even on the charts!  She is our tall girl though, putting her in the 90th percentile for height at 26 3/4 in long. She's grown a full two inches in two months!  Funny for Maggie is that her head is in the 25th percentile.  Lucky for me during delivery!! 

Allergies was a definite. The cough is being caused by the allergies as well, so she has been put on Clariton every evening.  We tried for the first time today and noticed a little difference in her allergies today.  I hope it helps.  Poor thing wants to be outdoors but oozes from the allergies.  Her ezcema is a little flared right now, but nothing that isn't controlled and managed easily.  Andrew and I left the office saying, "wow, ezcema and allergies--I can handle those problems!"  What a relief to be dealing with a non life threatening disease for our child.  What a welcomed adventure for our life! 

Developmentally, the doctor put her as a 7 1/2 month old!  She can roll all around, sit unassisted, reach for toys, stand when supported (putting full weight on legs), try to sit up when laying down, and starting to get on all fours to crawl.  Dr. Katz gave us the lecture on baby proofing--it's going to be any time now!  She'll be crawling in no time.  Jennifer Weintraub from Sugar Photography told me that they traditionally do six month portraits preferrably when they child can sit up but still isn't mobile.  I told her that if that is the case, we better do it soon!  So, our session is scheduled to be in another week and a half.  Just wait--she has something in mind for Maggie that I know is going to be great! 

Well, it's late and I have a long day tomorrow.  Dana has invited me, Larissa, my mom, and Frances to join her at her table at the Jewish Family Services luncheon at the Dallas Arboreteum.  I'm looking forward to it.  Larissa and I like to attend events like this to get other ideas or see how other groups are doing things.  Helps us.  Especially as a small growing nonprofit.  Oh!  Before I finish, I realized I never reported the absolute success of Heroes and Handbags--our live and silent auction of handbags benefiting Heroes for Children.  We had 500 people in attendance and, are you ready??--A NET TOTAL of $137,700!!!!! YIPEE!!  For a first year event?  That is unheard of!  As Cameron, our chair, board member, and my friend always says, it is because of Allie and Taylor.  She would call me and say, "guess what Taylor and Allie have done now!"  As a seasoned community volunteer, Cameron said she never saw fundraising be this easy.  Of course, I also attribute it to her and our amazing committee of women.  Tomorrow night is our wrap party and check presentation at Tory Burch (upscale shop in Dallas--Highland Park Village) to celebrate the success of the event.  Great things are happening for Heroes for Children!  We have given out $71,000 to date with over $6,000 waiting in our "to be paid" file for Mon afternoon (checks are cut EVERY Mon!).  It is simply amazing to watch this grow.

OK, seriously, I'm tired and I've rambled.  I've gone from sad and reflective to celebratory about an event.  See how my mind works?  Too many things going on. 

If you have not already seen them, be sure to check out the pictures from the post below.  Maggie is our smiling bug.  And such a ham!  She sees the camera and breaks into a huge smile.  She knows how to melt a heart or two.

I'm off to dream of my girls. 

Love,

Jenny

Monday, April 24th--

9:00pm--You know, if only Maggie were a happy baby.  Every day, I try to take her picture, and all I get is faces like this....

See what I mean?  What a grumpy baby!  Sometimes, I get this face....

On average, this is the face we see...

Maybe one day we will see her smile.  Just never seems to happen around here! You get the point. Oh, wait, you want more pictures, you say?  Well, who am I to say no!

Here's our girl

So, as you can see, life has pretty much been the way it should be--completely and whole heartedly centered around Maggie May!  We're having SO MUCH FUN!  She is an incredibly fun baby.  Every day, we giggle and laugh,  and we snuggle and kiss.  Tonight, we took a big blanket out in the grass and all laid down together with the dog for about thirty minutes talking and playing with the baby.  There is no place better, is there?

Maggie will be six months old on Wednesday!  Tomorrow is our six month check up.  I'm not sure how much she weighs, but I am guessing it is around 17 lbs.  Maggie has pretty bad allergies that have developed in the past few weeks.  Her eyes water so badly and her nose just gets so junky.  She absolutely loves to be outside, but it is hard on her at the same time.  The drainage has caused a cough that is giving her some sleeping problems.  She doesn't cough during the day much, but wakes up with coughing fits in the night and struggles to fall back asleep.  We'll ask Dr. Katz about it tomorrow. 

Maggie is needing me now, so I better get going.  I will post more later this week after her check up. Just had to share these faces!  All these pictures were taken in the past three days with the exception of the pink striped dress--that was her Easter dress!  And yes, that is Maggie wearing her Allison Leigh Scott t-shirt!  She wore it in support of her sister at the 5K this weekend.  She looked so cute and had a great time in the stroller on the course with her grandma!

Jenny, Andrew and a super smiling baby Maggie

Friday, April 14th--New Maggie pictures added today!  Check out her photo album

12:pm---It's been a long week.  I think I spent most of yesterday thinking it was already Friday!!  Nope, it was just Thursday. Luckily, today isn't a full day of work since Larissa is off with her kids (school holiday today).  I should be out of here by 2. 

Monday was Jordan's funeral.  It was devastatingly sad, but beautiful.  I spoke on behalf on Amy and family. Below is my speech....

I met Jordan, Amy, Matt, and Justin two years ago on the 12^th floor of Medical City—the stem cell transplant unit.  Jordan had just been readmitted to prepare for his transplant, and my daughter Allie had just been diagnosed with the same disease.  When he heard that a baby, only four months old, was battling the same thing as him, Jordan was upset.  He would look at her pictures, see her through the window of her room, and shake his head.  Even though his body was weakened from the treatment, his compassion and heart towards others was just as strong. 

I was affected by Jordan. What a neat kid!  Quiet and shy at times—obstinate and demanding at others. Sweet as could be.  Heaven forbid a nurse woke that child up before he wanted to—he certainly let them know what he thought of that!  He liked his late nights, staying up to watch movies with Amy and Justin in the hospital. 

I remember sitting by the elevators with him and Amy one night when he had some energy.  We sat and laughed and cut up, talking about everything, for over an hour until Jordan got tired.  During that conversation, I would watch him and Amy.  The connection between the two was amazing.  I remember thinking, “I hope my children love me like that when they are his age.” 

After my daughter died, I didn’t see Jordan for quite some time.  My husband Andrew and I thought of him always.  I created a nonprofit organization, Heroes for Children, with another mother that helps families with children with cancer in Texas.  When we started out, I new immediately that I wanted to create a program called “Laptops for Love.”  Laptops for Love collects new and used laptops to donate to older kids living in the hospital.  Where did I get the idea?  From Jordan, of course.  In June of 2004, Amy asked to borrow my laptop for Jordan.  For three days straight, Amy knocked on my door with the same request.  By the fourth day, Andrew and I knocked on her door instead.  Andrew had gone out that day and purchased a laptop for Jordan.  From that day on, the doctors commented that they noticed a difference in his demeanor and attitude towards being stuck in the hospital.  He was able to surf the internet to look up cool cars, something he loved to do, and play games.  Because of Jordan, I am so proud to say that Heroes for Children has donated almost twenty laptops to teenagers living in the hospital since the beginning of 2005!  That legacy will continue in his memory.

Last summer, I had the honor to be a volunteer at an amazing camp called Camp Discovery. Camp Discovery is a week long camp in Kerrville, TX for kids 7-16 who have or had some type of cancer.  The first day is usually hard for some of the campers, especially some of the younger ones who weren’t used to being away from home.  The younger cabins usually had one or two campers wanting to go home.  Last year, the “blue boys” as the cabin was called, had a homesick boy.  That first night, I was talking to one of the counselors.  He told me that one of his campers refused to come out of the “Band Aid Box” because he wanted to go home.  “What’s his name?” I asked.  Wouldn’t you know it—Jordan Morgan.  What a joyful surprise for me to hear him name and know he was there with me!  I hadn’t seen Jordan in such a long while, and I was so excited!  Jordan, a self proclaimed “Mama’s Boy” didn’t think much of camp that first night.  We saw each other for the first time the next morning.  He remembered me immediately, calling me “Allie’s Mama Jenny.”  I was ok with that name!  Jordan remained reserved the second day, but by then I think he decided to tough it out and stay at Camp Discovery.

Every year, camp does a remembrance ceremony.  For those children who want to attend, they take the kids down to the little lake with a dock going out over the water.  There, they read the names of the campers who lost their fight to cancer over the last year.  I was saddened to hear all the many names being called out.  Because Allie, my daughter, had passed within that year, the camp honored me by reading off her name as well.  After all the names were called out, beautiful white doves were released on the other side of the water.  The doves fly out from their boxes over the water, casting their image down on us.  It was breathtaking.  Being six months pregnant and emotional over the ceremony, I found myself unable to get back up from the dock.  Two people away was Jordan.  He sweetly walked over to me, reached out his arms, and lifted me up.  We embraced tightly, and Jordan held me as I cried for my baby.  Never in my life have I been so comforted by a child than at that moment.  When I needed it most, Jordan came and brought me peace. That very same day, Jordan made me a necklace in Arts & Crafts where I was working as a volunteer.  In front of all the other 12-13 yr old boys, Jordan proudly walked up to me with his necklace and put it around my neck.  I wore it the rest of the week.   It saddens me to no end to think that Jordan’s name will be called this summer out on the docks.  One of those beautiful white doves will represent such a beautiful soul as his. 

I have to end with a story that Amy asked me to tell.  That night at camp was our annual carnival.  Bounce houses, fun booths, cotton candy, dunking booths, prizes, and even Karoake.  Jordan and his new friend David were hanging  out by the karaoke machine. The next thing I know, Jordan comes bounding up to me with his disposable camera in hand.  “Jenny, Jenny, will you hold on to my camera and take a picture of me??”  “Well, sure Jordan, but what are you doing?”  “Karaoke!  David and I are going to rap!!”  Are you kidding me, I thought?  The kid had barely spoken to anyone at camp and now he is going to rap on stage?  Oh yeah, he was. When they called their name, Jordan and David excitedly headed up to the stage.  By the time the music starting playing, full blown stage fright had kicked in.  Poor Jordan froze.  David, oblivious to Jordan’s lack of rapping, kept on singing.  Every few words, Jordan would chime in.  Like he asked, I took his picture.  When he came off stage, I gave him back his camera, waiting for him to tell me how disappointed he was.  Not Jordan.  He came with a huge grin on his face, asking someone else to take our picture for us.  I then asked him what he was going to do next.  His response?  “Oh, I’m going to stick around here—David and I are going to rap again on stage!” 

I think any of us who have ever met Jordan probably have our own story to tell.  When someone dies, it is so difficult for us not to focus on the tragedy of the situation.  When that person is a child, it is near impossible.  However, I challenge you all today to think of your happy thoughts and happy memories of Jordan.  Get an image in your head of him—whether it be when he was a baby learning to crawl or walk, a young child riding his bike or playing with his brother.  Remember Jordan that way.  For me, I will always remember him with a big grin on his face after his moment on stage doing karaoke.  When I think of him, I will remember him from that night and I will smile.   

The speech went well, but it was very emotional.  Jordan was only 13 years old.  So much of his life yet to come and cut short.  During his illness, Jordan and his family had gotten in love with a men's biker Bible study group.  Over 30 of these men were there for the funeral.  Harleys were lined up in front of the funeral home.  When they were headed to the graveside service, the men all got on their Harleys. Justin, Jordan's younger brother got on with one man and led the group with the Hearst following directly behind Justin.  The motorcycles were roaring as Justin passed and then Jordan's casket in the Hearst. They then all followed behind. It was certainly a site to see. I know Jordan really enjoyed it! 

As you begin your holiday weekend--no matter what faith--please remember your many blessings and the lives of so many sick kids. Say some extra prayers if you will.

Lots of love,

Jenny

Monday, April 10th--

12:00pm--I'm sad today because I am heading to the funeral of our friend Jordan Morgan this afternoon. Jordan was on the floor with us on 12 South fighting AML. He was 11 yrs old at the time.  I have hesitated writing about his condition because I was too upset to talk about it.  Back in November, they found a tumor wrapped around his spinal column.  By the time he passed on Friday, he was paralyzed from the neck down and suffering quite a bit. 

I want to do a longer post, but I will do so after the funeral.  In the meantime, please say a prayer for Amy (Jordan's mom), Matt (stepdad), and Justin (Jordan's brother and bone marrow donor). 

Thanks,

Jenny

Tuesday, March 28th--

11:30pm--What is it about the special bond between father and daughter?  It is a unique relationship.  Growing up, I was always a "Daddy's girl."  For me, there was nothing better than my dad's lap to relax and snuggle.  There are so many pictures of me as a child cuddled up with Daddy. 

Maggie and Andrew are no exception.  She is a Daddy's Girl to the core.   She sees him and lights up.  Her eyes just shine as she adoringly stares at him.  Whether he is looking at her or not, she just stares at him.  A smile will come across her face as she looks at him.  He will then turn and look at her, and she will squeal with delight.  Daddy!!  For me, there is no greater joy then to see the two people I love adore each other so wholeheartedly.  At times, I will stand in a doorway or right in the room outside of them and watch and listen to them play.  I swear those two are in their own world when they are together.  I love it! 

 We've been very busy with Heroes for Children!  So many amazing things are happening with this organization.  So far, over $50,000 has been donated directly to families in Texas from Jan-March of this year!!  That's 70 families we have served so far!  The majority of our requests are to aid families with mortgages, rent, and utilities.  We do some unique situations too.  Friday, I have to pay a funeral home for a sixteen year's cremation.  He died just ten days after being diagnosed with cancer.  Devastating for the family.  They didn't even have time to let the diagnosis sink in before they lost him.  Last week, we paid for a family to fly in the grandparents from Mexico to say goodbye to their four year grandchild.  The parents were taking the child off life support but wanted the grandparents to be there with them. However, they were forced to decide between using the money they had to purchase the plane tickets or pay for the funeral expenses.  No parent should have to make that decision.  Andrew and I had a whole conversation about this when we got in the request.  As painful as it was to lose Allie, we were able to honor her and give her a proper funeral.  We didn't have to stress over that detail.  Too many families do have that added stress. 

Heroes and Handbags, our big inaugural event, is Thursday morning.  Seven months ago, this event was nothing more than a concept.  Now, it is a sold out "hot ticket" brunch with over 150 bags for silent auction.  Amazingly, we continue to receive donations.  We have bags from Gucci, Luis Vuitton, Escada, Burberry, Kate Spade, Kenneth Cole, Hermes, Fendi, and much more!  It is so exciting!!  Our live auction has six really fabulous and priceless items.  Janet St. James of Channel 8 news (she did the news stories on Allie and the first story on me and Larissa when HFC was formed) will speak, then Cameron as the event chair, then me and Larissa sharing the stories of Taylor and Allie and HFC.  Dana is our live auctioneer!  She is perfect for the job!  Cameron Smith has been instrumental in planning Heroes and Handbags.  I have become good friends with her throughout this process. Seriously, I have never met someone with a bigger heart.  She put together a committee of 63 women and coordinated this entire process. Heroes for Children is really lucky to have her!  She is even a member of our Board of Directors!  Thank you so much, Cameron!  You're wonderful and we adore you!

Luckily, Andrew is very flexible knowing that my job is a little different than others.  There's not much consistency.  Sometimes I have one to two night meetings, events, etc.  I love my job though!  Things keep me busy during our major event planning, but there is some flexibility to it too.  Yesterday, while working in the office, we had a surprise visit by the Eisenberg boys!  They came in to my office saying, "Surprise!"  Oh my goodness, those little men are too cute!!  I was so excited to see them. 

Little Maggie is so much fun!  She is our active girl.  She loves to be tossed into the air, tickled, and kissed!  Her fussing is usually fairly minimal.  It is because she is either hungry or tired.  Andrew and I are getting used to being stopped by strangers commenting on what a gorgeous child she is or how well behaved she is (seriously, she's five months, we know the tantrums are a comin'!)  Andrew and I, naturally home bodies anyway, spend almost every night at home playing with her.  We can't get enough of her!  She is now a vibrant active five month old!  Five months already??

It's funny how different my girls are yet so similar at the same time.  Some of their mannerisms are spot on identical.  However, personality wise, they are different.  Allie was my laid back baby. Nothing really got to her, except for her illness.  She was perfectly content to sit or cuddle up with someone on the couch for extended periods of time.  She could sit in front of the tv and be enthralled by Baby Einstein.  She was never shy towards strangers.  Most likely that was because so many strangers came in and out of her life living in the hospital.  Maggie is the opposite.  Sitting for long periods of time--no way.  She wants action!  She likes to go and do!  She will watch Baby Einstein every once in a while, but only manages to watch half before she needs one of us.  Shyness is starting to kick in a bit.  The sweet new thing she does is bury her face into the person that is holding her when someone is speaking to her.  I love it!  Wonder where she got that shyness from?  Surely not me--definitely her daddy!

Four months two weeks was a stressful age for me with Maggie.  That is exactly the age Allie was when we entered the pediatric ICU.   For about a week before and a week after, I over analyzed everything.  Everything was a symptom for us.  Is she eating enough, sleeping too much, more or less cranky, etc?  Is her face rash from something wrong or just because she is an excessive drooler?  Thankfully, the only thing wrong with Maggie was a stuffy nose.  I called the pediatrician's office and asked what to do.  The nurse kind of laughed at me and said, "well, it's just a stuffy nose."  I promptly told her, "I don't know what to do for a stuffy nose!!  I know cancer, chemotherapy and blood transfusions!  We've never dealt with a stuffy nose!"  I can deal with that any day.  Of course, Maggie is just fine. 

Developmentally, we are seeing progression with Maggie.  This is an interesting experience for us since we never saw progression with Allie.  She was too weak to do things like focus on her development--no rolling, crawling, etc.  She could sit on her own for a while, but only for a few months. By the time we got to her transplant, she was too weak to sit up on her own. It was just too hard for her.  Now, Maggie is learning to sit up like a pro, she rolls like crazy, reaches for toys, babbles, tries to pull herself up, and even tries to stand up on someone too.  Progression and normalcy--a new experience for us.  I'm excited to see it continue. 

Well, I guess that catches us up on the journal.  At times, I forget that people actually read this.  I didn't mean to go a month without writing.  Maggie goes to bed fairly late and we try to enjoy our nights to our fullest.  By the time I think about posting, I'm tired and ready to crawl in my bed.  Hopefully, I will remember to post sooner.

If you haven't checked out Maggie's photo album yet, take a look!  There are tons of new pictures.  That little girl is all smiles!  Her eyes are really becoming her prominent feature, the first thing people comment on, followed immediate by her extremely long lashes and her smile!  It is almost always in that order!

Thanks for checking in on us,

Jenny

Friday, March 24th--

9:00am--No way it has been a month since I last posted!  Oh my goodness--this month has absolutely just flown by!  Not to worry--things have been great!  Maggie is wonderful--truly the happiest baby I have ever been around.

I am heading out the door on my way to work (we are so busy these days with our big event Heroes and Handbags being next Thursday and our 5K next month!), but I promise to post this weekend.  For now, a teaser--here are two of our newest pictures of Maggie at four and a half months!  What a smile she has....

Sunday, Feb. 26th--

11:30pm--When Allie first passed, I cried everyday, multiple times a day.  The shower was my enemy, the place that my tears flowed most freely.  As time went on, I got to where I cried every other day, then even less.  There were times when it got worse again, depending on what was going on with our life, especially in the early stages of my pregnancy.  I would say that I now have breakdowns only a few times a month.  Last night was one such moment.  Tears overwhelmed me.

Why was I crying?  For everything.  I cried for my Allie and for my Maggie.  You see, Maggie is now four months old today.  Two years ago, the four month age held no significance to me.  My baby had her check up, weighing in at 18 lbs 9 oz, and simply had a viral infection.  One week later, my firstborn baby girl had cancer.  When I look at Maggie, my heart swells.  She is so gorgeous and sweet.  She makes me so happy.  And yet, each morning when I see her smiling face or when I kiss her goodnight each evening, my first thought is not, "You're so beautiful," or even, "I love you so much."  Instead, I take one look at her and with a pounding heart I think, "Please don't ever leave me." 

When will that feeling and that thought not hit me everyday?  I'm not sure.  Maybe I will always think that.

Maggie's four month check up went smoothly.  She now weighs exactly 15 lbs and is 24 3/4 in long, placing her in the 75th percentile for both height and weight.   Dr. Katz was very pleased with her development and her size.  She is just perfect.  Thankfully, Dr. Katz was very sensitive to our position, understanding where my anxiety comes from.  He again promised that he is willing to do a blood test at any time should I feel the need.  We know we will feel that need when she runs her first fever. 

Valentine's Day wasn't fun or romantic.  The day before, Larissa and Luke were set to drive down to Austin for a software training for Heroes for Children.  Luke had babysitting arrangements down there and her daughters had arrangements up here in Dallas.  Well, that morning, her oldest went to the doctor.  She had strep!!  So, of course, Larissa couldn't go.  We had to have someone go because this software was expensive for us (and going to be very useful!).  So that afternoon, I kissed my baby goodbye and drove myself three and a half hours away to Austin!  Oh, it was terrible!  I was gone all day Monday, Tues, and didn't get back until Wed. night.  I think I must have called Andrew six or seven times the night or Valentine's.  The idea of being alone in a hotel while my two favorite loved ones were home killed me!

Today was a busy day.  This morning, Maggie and I went to the Linton's church to see her boyfriend get baptized.  Luke Aaron was baptized this morning and we went to the Linton's afterwards to celebrate with family.  Then, Andrew and I drove with the babe to Ft. Worth to visit Frances and Jim.  Amie, Michael and the kids came down from Oklahoma, so we all had a wonderful afternoon and evening visiting.  Maggie loves her cousins very much and loves to be around them. 

Working in the afternoons on Tuesdays and Thursdays is difficult.  I work in the morning while she sleeps, and then usually in the afternoon again when she naps a second time.  Then, I either do more work when Andrew takes her in the evening, or wait until she is in bed to continue working.  At lunchtime, I like to schedule something to get us out of the house. 

Last week, Maggie and I went for the first time up to Rice Middle School--my old school.  I swear, it was like stepping into a time warp.  That school was my life before Allie got sick.  I loved it wholeheartedly.  Teaching was my passion. It was something that came to me so naturally, as though it were what I was meant to do.   Going there last week was strange for me.  I don't belong in that world anymore.  It has changed--many of the same people, even the same posters on the wall--it's me who has changed.  I'm not that person anymore.  I told Andrew last night that I don't think I will ever go back to teaching.  Debbie reminds me that my teaching experience most likely is making my job with Heroes for Children even better.  Those years of speaking to a group of kids, commanding their attention (though I didn't always get it) prepared me for public speaking and making presentations.  Maybe that's true. 

When we came home that afternoon from Rice, I was in a funk.  It shook me to the core to go there.  It was a collision of my former life and my present one.  I don't know when or if I will go back there to visit.  Maybe that just needs to be a wonderful experience in my life, but not one that I need to return to.  I still have some friends that I keep in touch with, including my friend Andy that now teaches at another school in Frisco.  Those people will always be special.  The kids that I taught will always hold a special place in my heart.  They helped shape who I am today, just as every other experience has.

It's time for me to crawl in my bed.  I want to finish tonight with an essay written by one of my former students.  She emailed me two weeks ago to say that it was an assignment for her English class to write an essay about how one experience can have the power to affect a person's life in a positive way.  She chose to write about me.  Reading her words gave me some peace, especially seeing the last paragraph.  Here it is.  Remember, I taught French, so I was not "Jenny" in that life, but "Madame Scott."  There will forever be a set of people out there that will think of me that way. 

         

Little did we know, Allie was an angel in disguise as a beautiful baby. By April 2003, Allie had fallen ill many times. Her parents knew something was wrong, but weren’t sure what.  By May, the truth was revealed. Allie was diagnosed with an extremely rare and little known form of cancer called, Acute Myeloid Leukemia.

         

The next five mounts were complete agony for Allie’s family, friends and thousands of people around the world.  Madame Scott poured her heart out through her online website, www.ScottHousehold.com. She updated as often as she could, sometimes daily, sometimes weekly.

         

Allie died in early September of 2004, a few days shy of her nine-month birthday. Before Allie passed away, her story spread like wildfire from the newspaper to popular local news channels.

 

But, even though Allie passed away many months ago, her presence in my life is still very there. The reminder of a young fighter helps me to keep my chin up on cloudy days.

         

Her mom’s life, on the other hand, shows the world a terrific example of perseverance. Madame Scott has started Laptops for Love. The non-profit organization is devoted to finding old and used laptops t to give to North Texas families with a child with Leukemia. Also, for many days, she worked at the Leukemia and Lymphona society.  And most importantly, she started (with the help of another Leukemia patient’s mother) Heroes for Children. Heroes for Children helps to provide financial assistance to leukemia patients around North Texas. Madame has also helped to raise hundreds of thousands of dollars to various leukemia organizations. And, she has helped raise awareness of donating blood and Acute Myeloid Leukemia. In fact, just the other day, I saw a commercial on the television for Acute Myeloid Leukemia.

 

Through this experience, Madame Scott went from being a devoted French teacher to a woman indirectly helping fight what killed her daughter. Although my French teacher may feel hatred at the thought of Leukemia, I see beyond that horizon. And, I see all the positive contributions she able to make through her cancer experience like further the research, help families and raise awareness of this life-taking disease.

 

I strongly believe that everything happens for a reason. And, although Allie dieing is not a wish we would want, this baby to me was a blessing from God. Maybe Madame was supposed to be co-founder of Heroes for Children all her life. Who knows? Only Allie.

 

Now for some pictures....

 

Our silly girl	She loves to practice sitting up
Young love--Luke and Maggie	Happy baby
Cousinly love--Maggie and Max	Two crashed out babies--Max and Maggie