Journal History
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Saturday, November 16, 2002 at 09:55 AM (CST)
Alright, alright... I have been given a hard time from a few avid followers that this time frame between updates is just too long. Actually, I agree, and I apologize. I've been spending time working on a new website for Molly, which is almost ready to be unveiled to all of you- please be patient. In the meantime, here's an update of Miss Mol.
Halloween was a blast. Miss Mol was a pumpkin (I'll get pics scanned soon), and she totally understood the concept of trick-or-treating! She'd follow TJ up to a door, and hold her pumpkin basket high in the air to receive a goodie. It didn't take too long before Molly was offering a piece to each greeter, sort of like a trading system: "You give me one, and I'll give you one." Once the trick-or-treating ended, and we were warm and cozy at home, TJ dumped all the candy out on the floor to sort. Molly quickly picked up her pumpkin, started filling it with candy again, and walked around the house with it to each closet door. She'd knock, show the closet her pumpkin, and wave good-bye. It was hysterical!
Last week, we had a meeting with all of Molly's therapists and a state coordinator to try and get the state to cover more speech therapy as well as prepare to transition Mol to their 3-5 program. The meeting went well. We were successful in acquiring the extra speech visit through the end of the year, and her progress reports from all the therapists were excellent. The therapy is proving to benefit Molly greatly. Let's just hope the school district is able to provide the same coverage for her. Molly will be going to school 5 mornings a week come her 3rd birthday in April. I am meeting with the Director of the Early Childhood Program on Monday to visit the site, and learn more about what they can offer to Molly.
Health-wise, Mol has another cold, but no big shakes. She seems to have fluid in both ears, which has caused her balance to be off for a few weeks, but it is not infected as of yet. Regardless, she was put on Ceftin (antibiotic) to help her battle the upper respiratory infection (cold). In addition, she received her first injection of Synagis, a vaccine for RSV, and her monthly infusion of IVIG, which she'll continue to get throughout the winter.
We're due to visit the ENT at Children's next week, so hopefully, we'll resolve the need for new tubes.
Molly's new love is Blue's Clues. She signs for "blue", hands me a video, and claps so hard you'd think her palms hurt. She follows the dances, and signs for more as she giggles and smiles throughout the show. I think at present time, she has viewed it, oh, nothing short of 10,000 times, but who's counting? She loves it! Otherwise, she is continuing to love her baby boosters class and her music class, and she cracks her teachers up with her anticipation of the next step in the routine. I think she wants to run the show, if you ask me. She, thankfully, has come around with all her therapists, and no longer cries for any of them upon my departure. In fact, she now blows me a kiss and slams the door in my face like,"I'll see YOU later!"
We've been busy preparing for Aunt Julie's wedding at the end of the month. Molly's flower girl dress is altered and fits her like a charm- she looks so pretty! I'll share some pics as soon as I can.
So, I've now caught you up on our lives... I am hoping to steer you to her new website in the next update! Until then, take care, and thank you for thinking of Molly and keeping her in your prayers. You are wonderful!
Monday, October 07, 2002 at 05:56 PM (CDT)
Hello everyone!
Thanks for checking in on Molly today.
Things are going really well! Molly is enjoying "marching" these days. Her PT has also been observing lots of progress in stepping over things, side walking, walking backwards and riding the little toddler bike. She's picking up speed, too. Her "run" is a fast march... very cute.
Molly has also been trying to articulate a few more words, like "tickle" and "dog", and her latest craze on video is Bob the Builder.She said "Bob" for the first time today! Her speech therapist told me she said "I want mama!" after I left her screaming bloody murder at the therapy office. Unfortunately, she has a very sad reaction to me dropping her off with one particular therapist, but calms down in a few minutes and is totally happy with her after I leave. On this occasion, however, she got so upset that she threw up all over herself. The therapist had to call me to bring a new outfit for her upon pickup. When I got back to the office, Molly was happily toddling around the halls in her diaper and her little pink windbreaker. Quite a look! I laughed out loud.
Her therapists are now working on identifying pictures for choices and integrating them with signs and words for Molly. She is understanding the cause-effect of communication as a result. I'm going to start working on some augmentative devices with her as soon as possible to get her ready for school. (She can press a button or a picture, and it will say a recording for her.) Speaking of school, we will be attending a transition meeting in November to discuss where Molly will best be suited for preschool. A meeting with all of her therapists will hopefully occur soon, too, and will be beneficial in guiding us toward the right spot for her in April. YIKES! I can't believe she'll be going to school in 7 months!
Molly's recently added a developmental therapist to her group of buddies. Judy comes to our house once a week to "play" with Molly. She is wonderful. She's been working on getting Molly to pretend-play, working on sequencing in play, as well as using communication pictures for songs. Molly really enjoys the special attention Miss Judy gives her. And she always brings a big box full of fun toys!
In addition to her therapies, Molly is really enjoying her Kindermusic classes and Baby Boosters playgroup. She is really getting good at following directions, and loves the routines both classes provide. We have a lot of fun singing, dancing, playing and doing art projects together each week. I'm really proud of her progress!
Medically, Mol is doing well. A quick trip to the pediatrician today proved Mom wrong. I thought for sure Mol was working on another ear infection, but, thankfully, her ears are clear. We're working to schedule her port flush next week and a possible IVIG infusion as well.
Please continue to keep her in your prayers as we head into flu and RSV season soon. Love you all and thanks for reading!
P.S. Please note the new address change for Molly's site. It is www.caringbridge.org/page/mollyb. Please update your bookmarks with the ".org" soon, as eventually, you won't be able to access the site without it.Thanks!
Sunday, September 22, 2002 at 12:36 PM (CDT)
Home again, home again, jiggety jig!
We made it! Our week at Duke brought lots of good news about Molly. After a rough start (and an antibiotic for that ear infection), things turned around. Tuesday's arthrogram won Molly a prescription for Tylenol with Codeine, so in addition to helping relieve any pain in her hips, we are sure it also helped with her teething. She slept like a log for the remainder of the week, which was a welcome change.
After having lots of blood drawn, all of Molly's blood levels were perfect. She remains 100% engrafted, with an enzyme level increase to 62.3! (The enzyme l-Iduronidase, the one she was missing). The echo and ct scan further showed that her heart, lungs, and organs are in good shape, as well. The opthamologist had to put her boxing gloves on, and everyone in the waiting room needed earplugs, but Molly's vision is normal- she does not need glasses at this point, and the corneal clouding is clear. We were also glad to hear that both Dr. K and the opthamologist agreed that Molly's eyes are opening much more than in the past. Although people still stop us and comment on how tired she looks (so annoying to her parents, but understandable), we have seen a definite improvement!
The only bumps in the trip were Molly's audiology test and her pulmonary function test. The audiology (hearing) test showed that Mol has lost moderate hearing in one or both ears. We all are assuming the repeated ear infections she's endured over the last 12 months are the culprit, and her ear tubes are on their way out. For this reason, we will be visiting a new ENT doc in Chicago to have new tubes placed, in hopes that they will work again to keep fluid out of Molly's ears. Dr. Kurtzberg suggested putting Molly back on IVIG (infusions of antibodies to help her immune system) for the winter, to give her the extra boost she needs to ward off or get through these infections. The only thing this infusion would affect is her vaccination schedule, which would need to be pushed off for another 6 months, at least.
Molly's pulmonary function test also showed a drop in scores from our last visit. The test requires us to make Molly cry (nice, huh?), and when she takes a big breath between sobs, a machine records the capacity of air that she inhales. According to her height (which ranged during the week from 86-90 cm, go figure...), she was to pull in a level of 470, and she didn't achieve higher than 340, about 72%. We're not exactly sure how accurate this test is, but without a doubt, it proved Molly's weakest point is still her lungs. We will continue with daily inhalant treatments to help her.
Other good news to report: Molly is growing! As I mentioned above, depending on the person and the way in which she was measured, she has gained a vertical edge! We hope this trend continues. She is in the 10th percentile for height, and the 90th percentile for weight, at 33.2 pounds. Her growth chart reveals a nice curve in the right direction. Go, Mol!
Needless to say, the week was filled with happy visits of old and new friends. Everyone who saw Molly was pleased as punch to see how she's grown and changed in the last 6 months. Due to Jenny's cold, we did not visit the BMT ward or the Rainbow Day room, and as a result, we missed a bunch of kiddos and nurses we would've otherwise loved to have seen.
Our trip home was delayed a bit in NC, but Molly fared pretty well. She was very excited to be plucked from that carseat after 3 hours. Everyone on our flight knew the "Three Little Ducks" song we sang about 10,000 times, and waved goodbye to Miss Mol as we departed the plane. We returned home to a very excited Mr. TJ, and got our fill of hugs we had missed during the week. Thank you to the Lundgren and Lennon families (and many others who offered to help) for watching him while we were gone. He was treated like a king!
Thank you for keeping Molly and our family in your prayers during such an important week. We know the power of your support, and we appreciate it so much. God bless you.
Wednesday, September 18, 2002 at 01:52 PM (CDT)
Hello from Duke!
Thanks for checking in on Molly. Things are going just fine. Despite a few hints of not feeling herself, Molly flew wonderfully.... she even took a short nap on the plane here. We were a little worried as she had woken up that morning really cranky (not like Mol), and when she saw Mom in a
mask, Molly was terrified (yes, mom got hit with a cold the night prior to leaving, so she is now masked 24/7.) Molly clung to John the entire day, and wanted to be held by him- a lot. She IS Daddy's little girl...and without a doubt, he is tightly wrapped around her little finger. Hopefully,
the mask will be history soon, and Jenny can regain some footing with Molly.
We got to our hotel late-afternoon, and by Monday evening, Molly was up about 5 times throughout the night, with a slight fever, and screaming. We thought for sure another ear infection was rearing it's ugly head, or she had a sore throat. She hadn't been eating or drinking much all day.
After her fever broke in the morning, we called the BMT clinic to get her seen by Dr. K early. We had an ortho appointment first thing, and while we waited to see Dr. Fitch (ortho doc), Molly became more of a pale, wet noodle,
eyes sunken in , and very wobbly. Molly somewhat cooperated through the x-rays of her back, which revealed more improvement in her kyphosis (curve in her back)!
Once we got to the BMT clinic, a very shy Molly was greeted by all her friends. Everyone can't get over how big she's gotten! Unfortunately, Mol was not up to showing her true personality to anyone. She just was not feeling well. Within the hour, Dr. K came to visit, and ordered an IV antibiotic for an ear infection and IV fluids and steroids to help
boost her through the stress of everything. Molly wouldn't let anyone get a glimpse of her throat. For a child who had weak jaw muscles, she surely clamped her mouth tight! We darkened the room, and Molly slumbered off for awhile- the last piece of the puzzle that made her feel MUCH better.
We cancelled our afternoon appointment, and went home to the hotel. Molly took a 3 hour nap, and woke up much more like herself. We decided that if she was to get another fever during the night, her surgical procedure todaywould be cancelled. The arthrogram would involve inserting a needle
filled with dye into the hip area, which would then allow for more clarity in x-rays. Giving that she would undergo general anesthesia, an infection being present would not fare well for her. However loudly she screamed through the night again, she did not get a fever. Hmmmm.
This morning's procedure went well. Dr. Fitch's assistant came out after the arthrogram and said Molly has mild hip displasia... no dislocation or subluxation of the hips...it was a "normal arthrogram". That was good news (really just confirmed what we already knew). Although she was a bit
cranky from being under, we were able to be at Molly's bedside when she came out of "hibernation". She had a peripheral IV in her hand, and two bandaids where the needle was inserted - both of which she was more than willing to try and rip off. She was NOT fond of them! And guess what? The
anesthesiologist was able to get a good look inside Molly's mouth for us, and she told us Molly is cutting all 4 molars. What a big girl! I guess she has a right to scream at night.
After her arthrogram, we had to return to clinic to get a repeat blood draw from yesterday. Seems the lab had a mix-up. We weren't too pleased about having to make the trip with a groggy and crabby little girl, but we ended up being happily surprised. As we sat in the waiting area, two of our
Hurler friends, Kiley Rose Dillard and Andrew Himes came strolling in, and it was wonderful to see them! Kylie is going home soon, and Andrew was back for his 1-year post visit. Both are really close to Molly's age, and
everyone seemed to be doing really well. It was so nice to catch up with them! We then were introduced to a new Hurler family, with their 4-week-old baby, Lainey, who was diagnosed in-utero with MPS1. She was adorable. In passing, I think we also saw the Bennett family, who have been in the news quite a bit. They have 3 children with a similar MPS disorder, and were having no luck getting insurance to cover transplants
for them. Dr. Kurtzberg appeared on the Today Show with them not too long ago, in support of their cause. I hope that they won their battle and are moving forward!
At the moment, Miss Molly is sleeping soundly in her bed. So far, the trip's been a little rough on her, but we're hoping it'll turn around soon. The next two days involve tests on Molly's heart, lungs, eyes, and ears, and a CT scan of her chest, brain, and sinuses. We meet with Dr. Kurtzberg
before we leave to go home on Friday afternoon.
Happy birthday to Aunt Patty today! Please keep the Baxendale family in your prayers this week as they proceed with the funeral and burial of Scott's dad, who passed away on Monday.
God bless you all!
Monday, September 09, 2002 at 09:22 AM (CDT)
Hello!
Thanks for checking in on Mol today. Things are going well... She did, in fact, develop an ear infection after that cold last week, but after a week of antibiotics, she's feeling much better. Unfortunately, the infection (the 6th one she's had in 6 months? I've lost track.) prompted Dr. Kurtzberg to order an infusion of Molly's IVIG (immunoglobulin antibodies), since her levels had been progressively dropping since her last infusion 6 months ago.
The day prior to this 2-hour infusion, Molly received a dollop of vaccinations in both arms- 4 total. She was a champ, but looks a little abused. Poor thing was a little out of sorts for a day or two after all this action, but is coming around just fine.
Physically, Molly is daring as ever. The RN who came to give her the IVIG infusion got a total body workout following Molly around the house with the IV bag in tow. It was quite different from the days when Mol would lounge in front of the TV for the 2-hour duration. Oh no, she was not gonna let a needle in her port and 5 feet of tubing stop her!
She officially took a "dive" down a few basement stairs when no one was looking this week, and scared the living daylights out of her mother. Luckily, she was just spooked, and not hurt... Thank you, again, guardian angels!
Lately, Molly's favorite thing to do around the house is hide in closets and play peek-a-boo. When she closes the door all the way, she politely knocks from the inside for someone to come and find her. If the door is closed before she can play, she knocks from the outside, and puts her ear to the door to listen for a response from within. It's very funny! She's also reorganizing the house constantly: remotes are in the toaster, videos are in the cheese drawer, medical supplies are tucked in her sock drawers, and she walks around with open cereal boxes tucked under her arm- just in case she wants a little snack. What a goof! She is obviously having a ball exploring her surroundings!
Molly's speech is moving along great, too. She is saying "Mom"... finally, and it just warms my heart. She has also started to show lots of interest in dressing herself, trying on shoes, and getting out of clothes to hop in the bath (she'd hop in fully dressed if I'd let her, so the undressing routine is a bit of a challenge.)
So things here are going well. We're getting prepared for our trip to Duke, and will update more as Molly undergoes her realm of tests the week of the 16th.
As you keep Molly in your prayers, please also say a prayer for a friend of ours (from high school) who was recently diagnosed with leukemia, and has just finished an intense round of chemotherapy. He is a father of 2 beautiful children, ages 2 years and 1 week old, and needs the power of your prayers. His website is www.jimmyburns33.com.
Thanks to all who have responded with interest in helping me sew central line wraps for the kids at Duke. I really appreciate it!
God bless you all!
Tuesday, August 27, 2002 at 12:10 PM (CDT)
Hello, Molly fans!
We are in the midst of another cold... bummer. I'm assuming an ear infection will follow, but it has yet to rear it's ugly head.
We had a nice visit to Children's Memorial last week, just to check in and get labs drawn. Everything looks good! We had the pleasure of meeting Kaitlin Koch (pronounced Cook), a 1 -year-old baby with Hurler, who is getting transplanted there next week. She is absolutely adorable! I would ask that you all keep her and her family in your prayers in the next few weeks especially. Her parents are terrified, as would be expected, of her future.
We got good news back from John's employer, who accepted our appeal to cover speech therapy for the next 6 months. The state had approved 2 visits per week, and we were under the guise that insurance was covering the third visit, but we were told a few weeks ago that was untrue. Thus, the appeal... and finally, we are back on board for speech therapy! Whew. What an exhausting, frustrating experience insurance can be.
Speaking of speech, Molly continues to progress. This week, she said "up" clear as a bell, and is telling us much more with the tone of her voice. It's very exciting! She is starting to show an understanding of colors, too, so we're really working on that. It's amazing to watch her brain at work!
TJ started Kindergarten this week. What a big guy he is! I think Molly will miss him, but hopefully, she'll enjoy the quiet time for naps and more one-on-one attention from mom.
We are scheduled to visit Duke the week of Sept. 15th. Among the "regular" tests Molly will undergo, she will also be having an arthrogram (I think I spelled that right) on Wed. the 18th. It is considered an outpatient surgical procedure, which we will learn more about from Dr. Fitch, the orthopoedic doc, on Tuesday, the 17th. (We understand that it will give him a better look at Molly's hips.) Please keep her in your thoughts this week, and especially on Wednesday, Sept. 18th.
Thanks for checking in with us today.God bless you!
P.S. If there's anyone out there who truly enjoys sewing (straight lines, nothing too fancy), and has the time and desire to help me in a volunteer effort for the kids at Duke, please email me and let me know.
Sunday, August 11, 2002 at 09:47 PM (CDT)
Oh my goodness... it HAS been a long time since I've updated Molly's page. I apologize!
Thankfully, there are only good things to report:
After her last ear infection, Molly finally got over the chest congestion that resolved itself about a week ago. She is now on Albuterol and Pulmicort (an inhaled steroid) to help her lungs/breathing. She's doing MUCH better.
The walking is coming along just great! Molly now tries to "tap her foot" to the music on tv... She looks a bit like a horse, but she'll perfect the move in no time, I'm sure. For now, it's pretty funny to watch. We're hopeful that her walk down the aisle at Aunt Julie's wedding in November will be smooth sailing. With her brother on her arm, Molly should be good to go. Her new mode of movement has allowed her to get to the refridgerator or pantry, choose her favorite food, and walk all the way back to the living room asking for help in opening the box or wrapper. When we've left her out of site for a moment, we've returned to find her strolling around the house armed with a piece of cheese in each hand, or shaking a box of Teddy grahams. Every little thing is a celebration.
The best news of all is Molly's increased "chattering". As her coined "giggle" remains a constant, she now likes to throw in a new phrase "dicka-dicka-dicka-dicka-dicka..." She says it constantly, for everything except the words she already knows and signs for, with various intonations and volume levels. She is progressing!
Her speech therapists are happy with her new level of confidence and desire to speak... they are continuing to work on oral motor skills, and have moved off of feeding, as Molly is now feeding herself regular food: she finishes off pb & j sandwiches like there's no tommorrow, and is drinking from a cup almost all the time. She is also very quick to let us know when something is not appetizing to her... She shakes her head back and forth so fast, you'd think she'd be dizzy. Her favorite words to date are "hi, dad, hat, bye, duck, down, and help", but she understand far more than that.
We're gearing up for school to start in a few weeks. Mr. TJ will be going to all-day Kindergarten, and Molly will continue her packed schedule of therapies and playgroups. We're signing her up for another Baby Boosters class at the therapy office in September, as well as the next Kindermusic session. Both seemed to prove very beneficial to Molly's physical and social well-being!
We're hoping to get a schedule soon for our return trip to Duke in mid-September. Molly will undergo her 18-month post-transplant studies. We're looking forward to getting back to Duke to see all our friends (Dr. K, especially... who was on the Today show last week! She's so awesome!), the nurses, and the families on the ward.
Thank you for checking in with us again. As always, your love for Molly keeps her moving in the right direction!
Much love,
Jenny
Monday, July 22, 2002 at 11:21 AM (CDT)
Yes, moving was the key to Molly's last update... and she "moved" herself right into an ear infection and cold last week. Ugh. Once again, Molly's on an antibiotic and is taking ear drops and cold medicine, but she's no worse for wear. She spent about two days feeling miserable, and now she's on the go again. During her exam of Molly, her pediatrician informed us that her left ear tube has fallen out, and that 3 of Molly's 2-yr. molars are about to bust through! I guess that explains why Molly's taken to eating her video tapes!
This hot weather has been a bit of a bother, since Mol has a harder time breathing in the thick air. Her wheezing and chest congestion gets worse even taking her out to the car. The decision was made to put Molly on Pulmicort, and inhaled steroid, in addition to her albuterol (bronchial dilator) inhalant treatments, to help her get through this cold bug and help her lungs in the future. The hope is that she'll be off the Albuterol in a few weeks, and stay on the Pulmicort thereafter.
Since Molly started walking (and feeling better), her communication is really stepping up. Her therapists told me this might happen, and it is just awesome to see. Molly is signing so much more, and she is "chatting" and trying out new sounds all the time. She seems to make the most noise when she's in the car or in the tub... I'm almost tempted to have her speech therapists hold their sessions there... hee hee!
Besides getting into everything, our busy bee proudly displayed her newest skill last week: Taking off her diaper after her nap, and tinkling all over her crib! What a joy. (Thank goodness that's all she did.) She giggled and laughed as we joked about her silliness.
So, all is well in our world. Thank you for checking in on Molly, and for all of your good thoughts. We'll touch base again soon!
Monday, July 15, 2002 at 02:39 PM (CDT)
Well, things are moving along... "Moving" being the key word. Miss Molly hasn't stopped going since she figured out how to walk, and with every passing day, she gains more speed and confidence. It's great.
Mol made it through her first round of vaccinations without a problem. She didn't even cry when they stuck her! What a champ. We'll wait another month or so before going on to the second round.
In the last few weeks, we've been able to have playdates with little friends, and get togethers with families we haven't seen in a long time. Mol does her best to keep up with the "kids", and laughs at everything they do. Speaking of laughing, Molly has manufactured her very own belly laugh- and she does it ALL the time. We went to breakfast at our favorite diner in town this weekend, and Molly had all the elderly patrons in hysterics with her laughing. They got the biggest kick out of watching her! (You could hear her across the room.) Of course, TJ can still make Molly laugh better than anyone, with his sharp "NO!" right in her face- it sends her into major giggles... which IS cute. However, his efforts have shown adverse effects when we're really trying to discipline her... Instead of looking at us with fear and stopping whatever she is doing, we get a HUGE chortle from her along with a silly grin. I guess that's what big brothers are for, huh?
Molly started getting therapy at the local therapy office this week. She had a ball. From playing on the computer (Reader Rabbit Toddler- it's awesome) to swinging on swings in the gym for PT, she enjoyed every moment. I think it will be a good thing. I'm still waiting to hear about water therapy to fill in for her other OT session each week. I know she would love that!
TJ, Molly, and I went to the pool this weekend- and boy, was it fun! Parents commented to me on how unafraid Molly was in the water. She loved running through the spouts and waterfalls. Pictures will be up soon- you can see the bathing beauty in all her glory.
Thank you all for checking in with us. We appreciate all of your love and prayers for Molly. Take care!
Friday, June 28, 2002 at 02:31 PM (CDT)
Greetings, friends!
We've got big news...
Molly is officially walking. There's no stopping her, even if she's a little wobbly now and then, she has figured out how much fun moving around on her two feet can be! She's also working to perfect her climbing act... Last night, she climbed out of her crib! She gave her mother quite a scare, but seemed to be no worse for wear when I found her on the floor. (Thank you, guardian angels!) She now thinks it's funny to stand on the couches and tables, too. What a little monkey!
Today marks our last day of nursing care at home. While a very positive step for Molly, it will be hard to say goodbye to all the wonderful women who have touched our lives in so many ways. Molly has received tremendous care and love over the last 9 months. What a help they've been! A "graduation ceremony" will happen this afternoon, with the local paper is coming to take Molly's picture in her cap. Hee hee!
We're preparing to make the jump from in-home insurance therapy to working with the Early Intervention state program next week. It seems like I've been preparing for this for quite some time, so let's hope the transition will go smoothly, and the bills will be covered. I will be taking Molly out of the house to therapy 3 times a week, and she will have 5 therapy sessions at home. In the Fall, she will start developmental therapy once a week.
Molly is really enjoying her Kindermusic and Baby Boosters classes! Last week, Molly made a flag and the kids (the class of four) had a parade with them through the halls of the clinic. It was adorable. We're gearing up for a beach party next week... watch out! We took her to the baby pool for the first time last weekend, and she loved it.
Thank you one and all, for your kind words about Molly's article. I hope it will serve to help diagnose other little ones, and let their parents know about the treatment that is available. I really appreciate you taking the time to read it.
God bless you, and Happy 4th of July!(in case I can't update before then...)
Monday, June 17, 2002 at 05:28 PM (CDT)
Hello!
This is just a quick update to let you know Molly's all better! She is doing so great- it's amazing what good health can do for a little person!
Yesterday, Molly signed the itsy-bitsy spider to me and said "itss","daa", "wah" (for itsy, down, and washed)- I almost cried. She's trying SO hard to speak. She knows exactly what she wants to say, too. I am so proud of her!
She is also doing really well with taking steps. Her confidence increases with each try, so that now, when she begins to fall, she'll catch herself and stand back up. She has had a substitute PT, Melissa, for the last two weeks, and she has been very impressed with Molly's efforts in that short time.Melissa also told me about hippo therapy, (therapy with horses), which I am looking into for Molly for the Summer.
Please say a prayer for Andrew Bowman, another child with MPS (MPSIII, Sanfilippo Syndrome), who was transplanted at Duke when we were there. He's had some serious complications as of late, and is back in patient on the BMT ward. If you want to visit his website, it is http://www.caringbridge.com/page/andrewshope.He and his family could really use your prayers.
I finally placed new pictures for you to enjoy! Thanks so much for checking in today.
Tuesday, June 11, 2002 at 10:04 PM (CDT)
Well, what seemed to be an improvement took a slight detour a few days later... While Molly's wheezing and coughing lessened with the meds, she started showing signs of yet a new cold only a day after the doctor visited. By the end of the week, her ear was draining quite a bit, and on Saturday, the pediatrician stopped by the house again to see Mol. Yep, not one, but both ears were showing signs of infection, so she's on new antibiotics- oral and drops, to clear up this "next (and final, perhaps?) phase" of fun. Poor thing, she wasn't showing too many signs except for the drainage, but the night we got her on the meds, she was in a lot of pain. Bless her heart- she is doing much better now, trying still to get rid of that cough, but sleeping soundly through the nights.
Molly had her first reunion with her nine Ahern cousins last weekend. We celebrated my mom and dad's birthdays (and cousin Courtney's, too) on Friday night. It was so nice to be surrounded by family again, and to see all the kids together. Although she was a bit shy, Molly loved watching the kids running around. She was particularly fond of her uncles, too, which we laughed about. (I think she sees too many different women on a daily basis... and is afraid that they are going to start doing therapy with her. Makes sense to me!)
Molly and I started her Baby Booster class, and it was a riot! Unfortunately, we had to be shifted into another time slot, because it was only Molly and one other little boy who signed up. Seeing that both sets of parents were interested in seeing our children develop socially (and speechwise, as well), it was determined that we'd all be better off in a class with more children. So, this week, we started her second class, in a new group with four other 2 1/2 year-olds, and it was a blast. Molly was the youngest child, and receives the most intense therapy among the group, but she hopped right in and did her best.There's another Molly in the class, so the name was being thrown around A LOT. I think Molly enjoyed the attention. The therapists who run the class are great, and it was nice for me to meet some other parents in this setting.
I also got Molly enrolled in a Kindermusic class once a week through the park district. We haven't started it yet, but I think we'll have fun. We know Molly loves music!
John and I are headed out of town on our first "trip" this weekend...our 10-year reunion at Miami University, scary! We're looking forward to seeing old friends and the campus, and we're certain that Molly and TJ will be in good hands while we're away. (Thank you, Julie and Eric, Mary and Ben, and Grampa B, for filling in!)
I apologize for not updating Molly's pictures. I promise I'll get to it as soon as I can take a breath from our summer schedule. Thanks for checking in with us, and as always, for your prayers and support.
We love you!
P.S. I think the July 16th issue of Woman's Day should be in stores soon...word has it a few family members already got their first copy!
Tuesday, June 04, 2002 at 12:14 PM (CDT)
Molly is doing MUCH better.... the increase in her breathing treatments and steroids seems to have gotten her over the hump with whatever she's been fighting. She has regained a spunk in her step, and is actually getting very verbal about what she wants and doesn't want! (Lots of "squawking" all day long!)
We were finally able to get her portraits taken last weekend. Molly did so well with a new photographer (the first try a week prior was a complete bust), we were really pleased with the results. I will post the new pics as soon as I get them scanned.
Molly's in-home insurance-covered therapy will be ending on June 30th. Her case was presented to a QE board for the state's Early Intervention Program, and they cut each of her therapies by one session a week. What a bummer. I think it all comes down to dollars, unfortunately, and even letters from the docs at Duke didn't sell them. Even after appealing for more speech and physical therapies, they feel they've given her much more than what is normally alotted for a child, and that Molly's rehab is more medically acute than what they typically provide. Blah, blah, blah. I don't buy it. (I want to know why Molly's parents were not invited to this meeting about our daughter. I would've gladly shared MY two cents with them!) On the other hand, the positives about the state-funded program is that although in lesser frequency, Molly will be able to continue with her current therapists, and they will still come to our house. (I have to remind myself to always look for that silver lining...)
Luckily, our insurance still provides coverage for out-of-home therapy, so I will take Molly to a clinic (or clinics, I haven't investigated this yet) to fill in for the remaining therapy she needs. It's going to be a very busy summer!
I heard back from Dr. K on the ortho report we received from Duke. She said the statement about both of Molly's hips being dislocated was untrue, and that the person reading the
x-rays was unfamiliar with Hurler Syndrome. She reiterated that Dr. Fitch, the ortho doc we've seen at Duke, was not concerned. He compared the x-ray with her prior films and said there was definitely no progression.
Tomorrow, Molly and I will go to her first "baby booster" playgroup at the pediatric therapy office. I'm really excited to go- I just hope Molly finds it to be fun, too. I can't wait to see her with the other kids.
Thank you for checking in with us today. Your prayers and support of Molly helped get her over this recent blip of sickness. Let's hope the warm weather brings continued good health for her! Love to all-
P.S. Just to let you know, it seems that there were 2 Woman's Day issues for June... (June 4 and 20 or something like that.) I'm not sure, but am guessing that is the same for July. If you don't see Mol in the first issue, check again for her article in an issue later in the month!I haven't gotten the final word from WD as to when it will appear. Stay tuned!
Tuesday, May 28, 2002 at 03:56 PM (CDT)
Well, Molly has proved to perplex us again... so many different options might have set off her recent bout of vomitting, a low-grade fever, and general lethargy, we're all left a little stupified. She finishes the antibiotic for her cold/cough/sinus infection(?) tomorrow, yet she has been more under the weather in the last five days. Hmmmm. Reaction to the antibiotic? Lactose intolerance rearing it's ugly head again? A viral tummy bug? Excess chest congestion? Steroid wean? Who knows... After speaking with Dr. K and Molly's pediatrician, we are going to give her a boost of steroids to help her through whatever she's got, and get her checked out tomorrow by one of the pediatricians. I'm sure she'll feel better soon... I'll keep you updated.
On a lighter note, I am pleased to share some fun news with you! Miss Molly is going to be a star! Woman's Day magazine has published an article about Molly and Hurler Syndrome, which will appear in the July issue. I believe it is available in June, so keep an eye out at the grocery check-out. Most of you will be familiar with the story, as it is a condensed version of the journals I've shared online with you, but having the widespread PR for MPS and Hurler Syndrome is very exciting. It's been a really fun opportunity for me, and as always, we are so proud of our little Miss Mol. We hope you enjoy it!
Finally, we received our report from Duke that Molly is ready to be immunized this Summer! Her immune functions are in the normal range! She will start her vaccinations slowly, and tests will be done to see how her body is reacting to them. This is a big step for our little lady! Otherwise, all of her tests results were good, including her skeletal x-rays, which were reviewed by the orthopedic doc after we left Durham. The report states a decrease in the degree of the kyphosis in her back (yeah!), but shows evidence of hip dislocation in both hips. Although no intervention was suggested at this point, I am going to follow up with Dr. K about it.
Thank you for checking in to see how Miss Mol is doing today. Hopefully, she'll be on the road to recovery soon, and back to herself! We appreciate all of your love and support.
Tuesday, May 21, 2002 at 12:33 PM (CDT)
Hi, again! Twice in one week! Wow!
Well, Mol did have to get an antibiotic to knock this cold out of her. It's so hard to tell if she has a sinus infection or not, because she never really shows the true symptoms of it, so we rely on time to tell us. After 16 days and no real turn for the better, a call was put into the pediatrician, and now she's on an antibiotic. A sign of the year to come, I guess.
I received news from Dr. K that Molly's skeletal x-rays were reviewed by the orthopedic doctor there, and he sees no need for any intervention at this point. We'll check again at her 18-month visit to Duke.
Molly continues to take about 5-7 steps at a time. She likes to "fall" into her target, whether it be one of us, or the couch... but she's making progress, and we're proud of her. Her physical therapist used goldfish crackers as bait to get her walking from the couch to the coffee table and back, which took her about 5 steps each way. Whatever works!
This week,I spoke to a mom of a newly diagnosed Hurler baby here in Chicago. Katelyn is 10 months old, and has 3 older siblings. Needless to say, talking to her mom brought back many memories of us receiving Molly's diagnosis. I hope to meet them in the future, to share our experience with them, and let them see how wonderful Molly's doing! Please keep this family in your prayers. They are having such a difficult time with the news.
We're hoping to get Molly's portrait taken this week... it should be interesting to experience, with her stranger anxiety. I'm bringing TJ along to help make her smile. He's looking forward to being goofy with me to get a grin out of Miss Mol. I'll be sure to share them with you when we get them back.
Thanks again for checking in with us... God bless you!
P.S. TJ learned to ride a 2-wheeler this week! After all the cheerleading we did, Molly now sits in her stroller and claps when he zooms by her... it's pretty funny.
Sunday, May 19, 2002 at 01:53 PM (CDT)
Molly is still working on her cold, although she seems to have a handle on this one. It's been two weeks, and we're watching her everyday to see if this bout will culminate with an antibiotic for a sinus infection. Hopefully not, but we're only giving her a few more days to try and get rid of this thing on her own.
The last week has been filled with busy therapy sessions and many evaluations as we head into the homestretch of our insurance-covered in-home therapy. We will be transitioning to the Early Intervention program in July, and evaluations are needed to determine the amount of therapy Molly will need. Of course, we armed them with letters from Dr. K and Dr. Escolar (developmental doc at UNC) so they know all about Hurler Syndrome, and more importantly, about Molly. We have worked it out so Molly will continue with the same therapists she has now, so she won't know anything is different.
"Book", "Book", "Book!"
This week, Molly clearly stated her first word. We are sooooo excited! It is a joy to see her enthusiasm for books, and listen to her demand them from us. She is also working on saying "duck"... her newest friend that she met recently in the bathtub. It's pretty cute.
I can't believe Summer is approaching so quickly. TJ's last day of preschool is next week! He has a busy summer planned with camp, t-ball, soccer, swimming lessons, and safety town classes. Scheduling around Molly's therapies was a hoot- but I can honestly say I am looking so forward to having a busy, fun-filled summer with the kids.
I got Molly into a developmental playgroup at a local therapy office starting in June. It is a small-group, parent/child program, led by a developmental therapist and a speech therapist. I didn't even realize these types of programs existed, so I felt as though I landed on a gold mine when I found it and got Molly enrolled. I think it will be a wonderful first-time experience for us. I am also working on getting us involved in a mom/tot music class as well.
This week, I learned that another Hurler child passed away. Mark Bernbaum was 10, and I spoke to his mom about a month ago. She called me to offer ME support, having just learned of Molly from the MPS directory. They live in a western suburb in IL, and we had a nice conversation. Mark never underwent treatment for Hurlers, but he lived a full life with his mom, dad, and older brother. I was touched by his mom's thoughtfulness in reaching out to me, so I'd ask you all to keep this family in your prayers. Sadly, we have yet another Hurler angel to watch over us.
Thank you for checking in with us today. I still can't get over how many people continue to sign Molly's guestbook... Even though my updates are less frequent, your words still keep me going.
Monday, May 06, 2002 at 04:29 PM (CDT)
Hello, Molly fans!
So sorry for the major lack of updates on our little Missy... Life just got really busy with a certain little boy in this house turning 5 last week. Whew- all birthdays are done for another year at the Birmingham household.
Molly is doing well. Well, except for the cold she has- again. Bummer. She's trying not to be cranky about it, but it's just the pits. Hopefully, we won't have to go another round with the antibiotics again, but we'll see.
On other fronts, Molly is really moving and shaking! She is officially taking steps! John and I put books on our heads and sit on the floor about 5 feet from each other, and she hobbles from one to the other to get the books. It's pretty exciting to watch. Otherwise, her biggest incentive is still walking to the tv to see Elmo, Barney, or now, the Teletubbies. She is standing for much longer periods of time, too. Her legs are really getting strong. It's so nice to see!
Speech-wise, Mol is also doing well. She makes an effort to say "hi", "book", "down", "no", and "bubbles"... She continues to use her signs, and is using them in various situations (She usually says "more" when eating, and today, she told her nurse "more" to keep the stroller moving!) She is definitely eating toddler food now, and doesn't seem to have the pocketing problems she did a month ago. We're still working to transition her to a cup, but she is doing well with feeding herself from a spoon.
She loves the tub, too! She and TJ have a ball in the bath together, except when she generously delivered little brown packages throughout the water. (no, I'm not talking about UPS!) Yep, we've been lucky enough to experience just about everything in Tub-ville, and all I have to say is TJ is a trooper. He thinks it's really funny! Our tub is so clean now from the various cleaners I used for that proud occasion, you could eat off of it!
Thanks for checking in with us. We really appreciate you caring about Molly and thinking about us.
Saturday, April 20, 2002 at 08:34 PM (CDT)
Well, we made it. A very busy week ended with a wonderful meeting with Dr. Kurtzberg on Molly's 2nd birthday. Of course, even after the week of a bunch of strangers approaching her to do yucky stuff to her, Molly crawled right up to Dr. K and climbed up on her lap. Amazing. They have a special friendship.
We learned on Friday morning that Molly's visual accuity is normal for her age. We are still looking into her droopy eyelids, and will rediscuss this as time goes on. We're hoping that as Molly grows, her face will "grow out" what seems to be edema over her eyes, and her eyes will be open all the time. For now, we are pleased that she can see, and we don't have to question why she tilts her head back : she is using both eyes as best as she can. No one is too worried about the way her eyes appear at this point, so we will readdress it at upcoming visits.
Dr. Kurtzberg shared some more good news with us at our meeting. Molly is still 100% engrafted, and her enzyme level is 57! We were so thrilled to hear this news. Immune function results will take some time, but they were "normal" back in January, so Dr. K doesn't expect any changes for the worse. The thickening of the sinus walls is common in some post-chemo children. She told us to expect a year of colds and antibiotics, as Molly's immune system is challenged by being out in public.
In addition to continuing with therapy on a regular basis, we will now focus on getting Molly out into the real world again... maybe a playgroup with mom or a sing-along class. (Getting Molly's mom used to this arrangement is another story! I think we'll start with one friend at a time.) We all agree that having Molly be around other kids will help her development immensely... as long as they keep their germs away! Speaking of, at the airport on our way to NC, Molly spotted a little boy her size running near her, and you would've thought someone put a firecracker in her diaper! She took off (crawling) after him faster than lightening, squealing the whole way. It was so cute to see her so happy about seeing a new friend. (You can only imagine how we scrubbed Molly down after she crawled on the airport floor- it was hard to hold back, but she was so thrilled to chase him!) Watch out, world, here she comes!
We are still waiting to hear the results of the x-rays Molly had at Duke. The ortho doc was not in town while we were there, so he should get back to us in a few weeks with his thoughts. Hopefully, there are improvements to report.
Molly's 2nd birthday was sort of non-eventful, to her at least. She had to endure her mother singing happy birthday to her the entire day, but otherwise, she was pretty clueless about it. We are going to celebrate this weekend with a cake and some presents. We are very proud of our special little 2 year-old, and we count every day with her as a blessing.
Thank you for all of your nice notes on the guestbook while we were at Duke. I didn't have my computer with me, but I thoroughly enjoyed reading through it when we returned home. You all are an incredible source of strength for us. Thank you, for your love and your prayers, and for your sweet birthday wishes for Molly. We are so pleased to be able to share all this good news with you, and hope that it will continue.
Thursday, April 18, 2002 at 08:27 AM (CDT)
Update from Duke:
Whew! Did we forget what NC weather is like, or is this heat
unseasonal? 94
and 95 degree days have us running for the indoors! Luckily, we've had
a
busy week of tests, x-rays, blood draws, and more tests... and Miss
Molly
is pulling through all of it like a champ! After getting lots of blood
drawn first thing Monday, Molly got to watch her Elmo video during an
echocardiogram. She was very good, and needed no sedation. The doctor
says
her heart looks great! Afterward, she had a CT scan of her head and
sinuses. She was so tuckered out from all the waiting (and crying- she
was
not a big fan of being strapped and taped down to the x-ray table), she
fell sound asleep just before the x-raying began. We're waiting to hear
more detailed results from Dr. K on Friday, but we did find out she
does
not have a sinus infection, rather thickening of the membranes (?) in
her
sinus cavity which may be chronic- thus, all of the nasal congestion
she's
had over the last year. We'll update on this as we learn more about it.
Molly has shown, in her crying vital capacity test, that her lungs
still
need that extra boost of Albuterol. Her lungs were working at 76%
capacity
prior to a breathing treatment, when the numbers bounced up to 98%.
We'll
discuss this with Dr. K on Friday as well.
The team of developmental docs at UNC really did a work-up on Miss Mol
all
morning Wednesday. Molly was so tired after all their poking and
maneuvering...Eight people saw Molly and tested various aspects of her
development. She underwent speech, physical therapy, neuro
developmental,
hearing, and phychological evaluations. Overall, their observations are
positive: albeit at a slower pace, Molly IS making gains in all areas.
While they saw the delays she's having in speech and motor skills, they
pointed out all that Molly has working in her favor: no hearing
loss,(hopefully eyesight is ok, too) no major physical problems
impeding
her movement, a young transplant age, and lots of dedicated people
working
to help her achieve appropriate developmental goals. We will continue
to
work with these women on how we can continue to provide positive
opportunities for Molly's growth. Speaking of growth, she is 33 inches
tall, and a whopping 42 pounds! (Time to lay off all that cheese, Mol.)
And
to think, just 6 months ago, getting her to eat was one of our biggest
challengesl!
Later that afternoon, I came back to the hotel to see the trick Molly
and
her dad had been working on: Molly was taking a few steps from the
coffee
table to the tv... on her own! Elmo is good motivation, as is the tv
right
at her eye level. I was so thrilled... What a nice surprise the two of
them
worked out! We hope the steps will continue, so Molly can be off and
running in no time. Thanks to John for being the best dad Molly could
ever
have!
We want to thank you for all the prayers being said for Molly, today
especially. Her port surgery went really well. She has no more
lines!!!!!
(This is going to be hard for me to get used to.) Her port is under her
left ribcage. Prior to the surgery, they checked her optic pressure,
which
came back normal- great news! This afternoon, Molly seems to be doing
just
fine post-surgery. We brought her back to the hotel 3 hours after the
procedure, and outside of being a little groggy, she's eating,drinking,
and
watching her Elmo. Whew! Another successful surgery under her belt.
Watch
out, TJ, someone's really gonna make waves in that bathtub, now!
(Actually,
we think TJ is the most excited of all about Molly losing her "cords".
He
made up his own song for Molly to the Joseph theme song... "Go, go, go
Molly, you know what they say... you'll go in the bathtub and say Hip
Hooray!)
We still have to get Molly a skeletal survey (x-rays of her entire
body)
and an eye exam before meeting with Dr. K on our way out of town. We
did
see her briefly as we swung through clinic yesterday, but we're really
looking forward to wrapping up the trip with a visit at her office. I'm
sure she will have lots to add on the results they are seeing.
Happily, this trip, we have been able to fit in lots of visiting... we
met
five new Hurler babies who are in the transplant process, and their
wonderful parents. Hopefully, I'll have a picture of the group to
upload
onto the site soon. It was so incredible to meet and talk to these
families! The kids are all adorable, and the parents are very strong.
We
also got to see Kylie Rose, one of the Hurler babies who was here when
we
were. She is doing much better these days, and her mom is talking about
going home soon! What a blessing. She was so cute, pointing at Molly
and
saying, "baby!" It was great to see them again. Of course, our trips to
the
hospital also included visits with all of our "friends" and nurses in
and
around the facility. Everyone was pleased to see Molly, and couldn't
get
over how BIG she is getting, and all that hair she has! It's been
really
nice to reconnect with this "extended family."
Once again, thank you for checking in on Molly's page. (Thank you to
Aunt
Julie for helping to get this update online for all of you to read.) I
will
update again as soon as I can. Please continue to keep her and the
other
children here in your prayers.
Saturday, April 13, 2002 at 08:47 AM (CDT)
Thanks to everyone for their well- wishes for our trip to Duke. We leave tomorrow, so the packing is underway. It's been fun to dig out some summer dresses for Molly, as the weather will be in the 80s while we're there! We're hopeful that the airport and flight will be uneventful. If only they'd show Elmo videos on the plane.
Molly is feeling MUCH better. She has gotten sick a couple of times this week- I'm not sure if she's inducing it from crying or if the new med she's taking is upsetting her tummy.
I'll have to keep an eye on any trend I notice.
I asked Molly's therapists to write up a summary of progress for the docs at Duke, and boy, she's really made some strides in the last few months! Although minor steps, it was so nice to read about all the progress her therapists are seeing. I'm hoping the Duke staff agrees in their evaluation of Miss Mol.
Speaking of progress, this little lady better get walking- and soon! Molly was asked to be the flower girl in her Aunt Julie's wedding this November! Big brother TJ will be her "attendant", in case she needs a little help. (He thought he could pull Molly in a wagon if she isn't walking yet.) We can't wait to see them all dolled up for the big event. We are so thrilled for Julie and Eric!
I'm gonna sign off...the suitcase is calling my name. We'll update on our trip to Duke as soon as we can. Love and thanks to one and all!
Monday, April 08, 2002 at 05:00 PM (CDT)
P.S. Mol's new antibiotic is really helping the cold.. She is MUCH happier, and has found her giggle! Thank goodness.
Thank you for stopping by- we love you!
I uploaded a few pics- enjoy!
Hello, all!
Boy, this cold really wants to hang around! I took Molly to Children's, and they did a respiratory/viral battery and took labs, but both show nothing terrible going on. However, after 3 more days of the congestion and coughing, she was put on an antibiotic. Hopefully, this will knock-out whatever's bugging her! She's been really clammy the past few days... I hope she's not trying to tell us something is up!
She continues to eat and drink new things: her latest is orange juice and yogurt covered raisins! She's also gaining jaw strength and loving the laffy taffy her speech therapist is using with her. Yeah, Mol!
Otherwise, we're busy getting ready to head to Duke next week. I will try to update as soon as we get home. Please keep Molly in your prayers on Wednesday(4/17), as she will be undergoing another surgery to have her lines removed and a port placed.
We're anxious to see all of our friends in NC as well as meet some new Hurler friends who are at Duke now.
Thanks for checking in today!
Friday, March 29, 2002 at 11:23 AM (CST)
A week on Augmentin hasn't really seemed to do much for Mol. Dr. K thinks she just has a viral cold, and it will take time for her to get better. She is coughing, but her lungs are clear, so we're not too worried. We'll just have to be patient.
Our celebration for Molly's 1-year transplant anniversary was really nice. We had about 10 family members over for lunch, and then went to church for a private prayer service for Molly. It was so personal, and perfect for the occasion. Everyone got to bless Molly with holy oil, we listened to some beautiful readings about God's love for children who are suffering, and we prayed an Irish prayer together. Deacon Foley did a wonderful job of personalizing the service just for us. We were really touched. When Molly wasn't in our arms, she was rolling around on the floor, flashing smiles at the circle of family which surrounded her... truly, the "center of attention". What a difference a year makes. I shared my thanks to God for all of the caring people who have supported us through this challenging year... It was a very special day.
I finally got Molly some shoes that she likes! She has been wearing them everyday, and boy, are they helping her stand! She is almost perfecting the balance thing, so we're hoping the steps will follow soon.
Molly is also sipping from a cup, and becoming more interested in feeding herself with a spoon. She also greets us from her crib with a hearty "HI!" All of these things show such progress for her.We are very proud of her efforts.
Thanks for checking in with us today. Have a blessed Easter, one and all.
Wednesday, March 20, 2002 at 04:02 PM (CST)
Well, that bugger of a cold found its way to causing havoc... Once I got Molly's labs back this week, her WBC went from 4.4 to 14.2... and I knew something was brewin'. So, I emailed Dr. K, and put in a swift call to the pediatrician... Molly got herself a late-evening visit at the house (I know, what an amazing group of doctors, huh?), and a prescription for an antibiotic in case a sinus infection was to come. Well, by 5AM, Molly got a fever, so we've started the augmentin. This is the first time since we've been home that Molly's gotten a fever, and I have to say, I was thrown right back into the frame of mind that I had so often at Duke. I was really scared! I kept telling Molly she was going to be fine, moreso for my own sanity than for hers. She was a wet noodle in my arms as we watched and early morning edition of Barney together in the dark. I yearn for the day when I don't panic if her temperature is anything but normal! A little Tylenol did the trick, however, and hopefully, Miss Molly will be back to herself again soon. No more fevers to report.
Our trip to the eye doctor yesterday was a disaster. With Molly having the cold, she was less than pleasant about a stranger poking around in her eyes. She screamed and cried til she almost made herself sick. It was a blast! Can't wait to go back! Thank goodness for the doctor's agility... Amidst the flailing and screaming terror, she was able to quickly squeeze in a peek to see that Molly's corneas show no cloudiness, and her optic nerves look good. We are hoping to get a refraction exam done under anesthesia at Duke, which will give us a better indication of what she can actually see.
Tomorrow, Molly will have her LAST monthly infusion of Pentamadine and IGG at the house. What a long way she's come... I am very proud of her!
Thank you for keeping Molly in your thoughts, and for checking up on her progress. Saturday is her one-year transplant anniversary. We are so blessed!
Friday, March 15, 2002 at 12:27 PM (CST)
Hello, all-
Let's see... when we left off last, Miss Molly was getting into everything. Well, suffice it to say, she is progressing quite nicely in that area, and is perfecting her way of tearing up our house. In addition to ripping her wallpaper border away from her bedroom wall, (what it is with these Birmingham kids? TJ used to do the same thing!) she took her first plunge off the couch this week, much to our dismay. She is fine, however, Mom and TJ can't say the same. We were both terrified by her daredevil antics, and learned a valuable lesson on heightened couch patrol. Molly also got really daring when she experimented with eating yogurt on her own. She was strawberry pink from head to belly button! (see picture in photo album.)
Unfortunately, Molly's got a bit of a cold this week, so she's been a bit crabby, and not eating as much. We're hopeful it won't turn into anything worse. We did receive some great news from Dr. K this week. Molly's January blood tests show her immune functions to be normal! Woo hoo! I guess this means we can get Miss Mol out into the real world a little bit, but we're still so hesitant to expose her to things that will really challenge her immune system. This next year, we're told, will be the real test- Molly will probably experience lots of colds and bugs as her immune system kicks into high gear. As apprehensive as we are, this is a huge step for Miss Molly. We are so pleased to know that the transplant is holding on strong, and her little body has worked hard to crank out a sizeable army of defenders. For now, we'll put the mask in our pocket and let Molly out of the house to play and learn. Maybe a playmate here and there, but not with anyone who's sick. That'll take awhile still.
Other news to report... I'm looking into the 0-3 Early Intervention program here for continuation of Molly's therapies starting July 1. The good news is that not only do the therapists come into the home for children ages 0-3, but her current OT and PT therapists are employed by this program, so they can continue to service Molly's needs! No transitioning will be necessary... either in location or therapist!!!! (I just hope it works out as smoothly as it sounds...) Molly's speech therapist has also agreed to continue in-home therapy, because it is easier for her to get here than to go to the office... How nice!
We sadly bid farewell to our friend and nurse, Mary last week, and wish her the best in her new endeavors. I just got word today that a new nurse will be orienting to Molly's case next week to cover the days Mary was here. What a godsend these nurses have been to me!
Thank you for your prayers for Molly, our family, and all of her friends going through the transplant process. Your prayers for Susannah really helped. She is home again and doing well.
Happy St. Patrick's day... Many Irish blessings to you and your loved ones.
Tuesday, March 05, 2002 at 09:03 PM (CST)
P.S. Check out my new pics! (3/6/02)
Hello!
Thanks for checking in. Molly's doing really well! She got her first pair of shoes today, and wasn't too pleased about dragging them around with her, but hopefully, she'll get used to them. We're hoping they will provide a little more stability to get her walking confidently. Still no steps on her own, but she's working hard at it. This week alone, she's made her way to pull 2 full cups of TJ's milk off tables, gotten into the bathroom to splash in the toilet, successfully snacked on one of her hair bows (I found it inside her mouth), figured out how to turn on the stereo and volume, and is zipping in and out of rooms and up stairs so quickly that we can't keep her out of sight for even a moment! It's wonderful.
We've scheduled a return trip to Duke the week of April 15th. Among other tests, Molly will have an MRI and also have her central lines removed and a port placed in one surgery. We're still waiting to hear on her immune function results from January...
Otherwise, we got a very detailed report from our last trip, and it shows that Molly is progressing nicely. Her kyphosis (curve in her back) has improved, and, as we knew, she is making strides toward the bigger developmental milestones. We were pleased.
Next week, Molly goes to the opthamologist for a visit. I will update after we've gone.
Barney is still ranking very high in our house these days. Molly has successfully combined three signs together to say, "More Barney, please!" It's pretty funny. She is now switched from calling a book "buh" to "xks", so if she can jut put the two sounds together, we will have a word! It's nice to see her mind working so hard to communicate.
One of our nurses, Mary, is leaving us after this week. We (Jenny especially) is very sad to see her go. She is moving onto another nursing position with a different company. She has made SUCH an impact and taken such good care of Molly and our family, and she will be missed.
One big accomplishment for Molly was her last dose of FK506 this past week! This is the med we gave her for graft vs. host disease... She handled the wean quite nicely, and is almost med-free now!!!! (She still gets a minimal dose of steroids every other day, and takes Prilosec at night. Both of these should be discontinued after our trip to Duke, or at least we are hoping.)She has her final infusions of Pentamadine and Immunoglobulin scheduled for later this month, too. It's a very strange thing to not have to give Molly medicine after all she's received this year.
I do enjoy being able to share these happy updates with you. Please continue to pray that Molly stays on this track to restored health and development. Also, please remember all of the other children with Hurler Syndrome and those going through the transplant process. They are all such special gifts from God... and they need our support.
We love you all!
Tuesday, February 26, 2002 at 10:17 AM (CST)
Hello, all!
Sorry I haven't been updating much lately. Things have been moving along with relative "normalness"... so there wasn't much to report.
Once we put Molly on Lactaid milk, the vomitting seemed to cease. This week, we reintroduced regular milk, and she's fine! It must've been a combination of the meds she was on and the lactose. We'll hope this non-vomitting trend continues.
We got Molly's labs back last week, and her counts are pretty good. (WBC 4.4, HGB 12.6, PLT 260) We also went to Children's for a check-in visit, and everyone thought she looked great! We are currently working with the staff there to schedule a surgery to have Molly's central lines removed and a port placed around the end of March. Then, we will be heading back to Duke for her one-year studies in mid-April. We don't have any definite dates yet.
On other fronts, Molly continues to battle through the teething war. Those 5 molars are causing her much irritation, so the Hurricane and Motrin are in full use! I was worried that we were masking a possible ear infection by giving her the Ibuprofen for slight teething fevers, so our pediatrician stopped by the house yesterday to check her out. Her ears looked just fine, thank goodness. We'll keep the cold teethers and numbing gel comin', Mol!
Molly has a newfound love for Barney. She will choose the Barney songs video out from all the others and hand it to us. She screams "Adjyah!" at the TV as soon as it starts. (We're assuming "Adjyah!" is Molly's way of saying Barney...) It's fun to see her getting so specific in her choices, and communicating them to us as best as she can. Her signing is really helping a lot.
Molly's therapists continue to see progress each week. Her speech therapist has been working on textures with Molly, and this week, we found out she loves crackers with peanut butter and American cheese! I really hope that the teething is what is effecting her chewing and swallowing issues. Until those teeth come in though, we'll just have to keep trying.
I have to mention a big thank you to the special people who sent Molly a musical Gund bear with the Edelweis song. Somehow, you just can't get by Molly's grandparents. They are too creative, and much too thoughtful! Thanks Gramma and Grampa B! It made my day, and Molly's too.
Thank you for checking in with us today. As you remember Molly in your prayers, please say a very special intention for our little friend, Susannah, who was admitted to the hospital this weekend in San Diego, and her family. Her website is listed below.
Thursday February 14, 2002 12:03 AM CST
Happy Valentine's Day!
Molly sends everyone a HUGE hug and kiss for all of your support and continued interest in her.
She is doing well. For now, the vomitting has ceased. We are very relieved. We're going to try to re-introduce some lactose into her diet in another week and see what happens.
Otherwise, she is getting 5 molars... OUCH! Teeth are coming in everywhere! We've decided to delay use of the rhino cruiser for about a month, and see if Molly can get walking first... her hip displasia is not THAT bad (yet), so the docs were okay with her not wearing the brace for now.
Good news and thank you for your prayers: our appeal for more in-home therapy was approved thru June!!!!! Everyone who knows Molly and sees her working so hard at therapy is thrilled. Come June, Molly's immune system should be up to enough snuff to get out into the real world for therapy...
Lots of love to all of our readers and friends. May you feel as loved as we do, today and always!
P.S. I added new pics last week, but forgot to mention it!
Wednesday February 6, 2002 9:33 AM CST
Hello, all!
Thanks for taking the time to check in. Things are going pretty well. For the moment, Molly is doing great, with the exception of some yucky vomitting. It's been going on for about 3 weeks, and we're working with Dr. Kurtzberg to figure out the culprit. So far, we've halved the antibiotic dose she's getting, and discontinued the oral magnesium. When those changes didn't seem to help, we decided to try lactose free milk again.(She's been drinking 2% milk for a month, and loving it.) She's only had 2 bottles of it so far, but has not vomitted.... We're pretty sure it's reflux or a lactose intolerance. I'll update more as we learn about it.
Otherwise, Molly got her rhino cruiser brace for her hips. She wore it without a problem for one nap and half the night. She seems to be okay with it for awhile, but she gets very frustrated, as it leaves her unable to move. While John and I know it's what is required for her, it's heartbreaking to limit her after she's worked sooooo hard to learn how to move! She has just mastered rolling, crawling, and pulling to stand in her crib, and she loves it! Dr. K agreed that causing her frustration and rendering her motionless at this point seems like a step in the wrong direction, and is checking into more details with the ortho doc at Duke on how critical it is for Molly to wear it.
Molly is working on her speech more and more everyday. She is now signing "mama", "play", "bubbles", "shhhh", and is very close to saying "book" , "bye bye", and "pop" as she signs them. She babbles tons, saying lots of "na na", "ba ba", "da da", "ya ya"...It is so exciting to see and hear! Her speech therapist, Kelly, is also working to get Molly transitioned from a bottle to a sippy cup, and we've taken pictures of everything "Molly" in the house, so she can identify objects and make food and toy choices.
Physically, Molly is now zooming in and out of closets and up the stairs. (Have I mentioned that she would like to take up residency in the refridgerator?)She is a little sneak, and will make it up 4 or more stairs before she lets out a little sound to let us know she's on the move. She's really gaining confidence with her walker, and will transition from scooting along furniture to grabbing the walker and going across a room without trouble. She has also just begun transitioning from standing to sitting, but is quickly realizing the benefit in it. We're still waiting to hear about our appeal for more in-home therapy. Please keep your fingers crossed that everything works out.
We're so pleased with Molly's progress. She continues to make us smile all the time, and gives hugs now on request. Thank you for keeping her in your thoughts and prayers. Please also rememember all of the other children suffering from Hurlers, and/or going through the transplant process. We love you!
P.S. If anyone knows of a musical plush toy that plays "Edelweis", will you email me, please? It's Molly's favorite lullaby, and I'd love to get one for her... (When TJ hears me singing it to Molly, he begs me to sing that "Cradle Eyes" song to him, too. Hee hee!)
Tuesday January 29, 2002 7:37 PM CST
Hello, all!
This is a quick update to let you know things are good. Molly is feeling much better... She developed a new "look" this week, where she squints her eyes and nose and looks up with a big grin, as if she's saying "aren't I cute?" I've tried to get a shot of her with the digital camera, but I've had no luck yet. However, I did add a few new pics from a little photo session we had today.
Other good news... we heard from Dr. K that Molly is still 100% engrafted- all donor. We are so happy!
Please keep Molly and all of her friends who are still battling illnesses(in and out of hospitals)in your prayers.
Thank you for checking in with us.
Take care!
Friday January 25, 2002 8:36 AM CST
Hello, all!
First off, I want to thank everyone who is signing the guestbook. It absolutely makes our hearts sing to read your happy notes. Thank you for keeping up with us and continuing to check the site (especially when I don't update it as often! sorry!)
We got our first dose of great news last weekend from Dr. Kurtzberg. Molly's enzyme level (the one she was missing) has more than doubled! It is in an awesome range, and may likely come down a wee bit in the future before it stabilizes...Needless to say, we were thrilled. Still waiting to hear on engraftement and immune functions.
Molly is doing really well. Apparently, the sinus infection WAS bugging her. Since she has been on the antibiotic, she has become the happiest, smiliest, giggliest little lady! The nurses and I were astounded at how well she handled being sick (we didn't even know!), and we are so happy she's feeling better.
She had her monthly IVIG and Pentamadine infusions at the house yesterday. We got to meet Melissa, a new home health nurse, who was very nice. Molly made her work a little harder than normal as she woke up from napping, and began to cry and choke for about 10 minutes. She was sweating and very warm, and finally vomitted... into a blanket I had ready to go, thankfully. I was a little worried that she was reacting to the meds, but she settled down after awhile. She was in quite the Benadryl bubble all day long... groggy and drunk, it seemed.
Molly is really trying to communicate these days. Her signing is becoming more clear, especially "book". She uses it for everything she wants, it's pretty funny. Coming in at a close second is "video", which she does when book doesn't have an effect on anyone. Today, she asked for a "bottle" and "cheese". It's amazing to see, and fun to know that the wheels are really turning in her head. Otherwise, she's making lots of sounds... but no true words yet (besides "Da Da", of course. John still gets the preferential treatment around here. Ha!) Earlier this week, our nurse, Mary, said, "Molly, now we have three M's: MMMMMary, MMMMollly, and MMMMommy!"
Molly, in a very matter-of-fact way, replied, "DA DA." We were in hysterics.
We're working on another appeal to keep Molly's therapy in-home until Spring. Keep your fingers crossed... the therapists are making such strides, it would be a shame to have to stop now.
Please keep another Hurler family in your prayers. Alexis passed away in Minnesota yesterday. She was a darling little girl, with loving parents and two older siblings. It is always so sad to lose another child to this horrible syndrome. We hope she is out of pain and playing happily with all the other little angels we know in heaven.
Thank you again for checking in- we so appreciate you thinking of Molly. I'll try to get new pictures up soon! Take care!
Thursday January 17, 2002 10:08 PM CST
Well, we made it. A feverishly fast 4-day trip to Duke completed. Molly did great! She was awesome in the airports and on both plane trips (even though Mom was a bit of a wreck about the germs), and she handled the busy shedule pretty well.
Results... I know that's what you want to read about, but we didn't get too many, actually. Most of the biggies will come at a later date because they are blood tests. However, we did get a few updates to note. Molly scored 94% on her crying vital capacity test, which means her lungs are getting stronger. Her echo cardiogram was consistent with her 6-month studies, so I guess that's better news than it getting worse. The cloudiness on her eyes is just about gone, and her hearing is good. The developmental doc was pleased with all the progress she's making, and wants us to keep up with all the therapies at home. The orthopaedic doc suggested a brace for Molly's hip displasia (to wear when she sleeps), so we're looking into it here in Chicago. Otherwise, her kyphosis (curve in her back) showed improvement. Her CT scan revealed that the ventricles in her brain are decreasing in size (this is good!) from transplant, but it also showed that she has sinusitis (another sinus infection)... so she's going on an antibiotic to clear that up. She's had a cough/congestion for a few weeks now, but never a fever, so she was trying to tell us something was up, it just wasn't totally obvious. (I had every nurse and doc I came into contact with at home listen to her, and her lungs sounded good... we never thought of her sinuses, thought.) A CT scan is the only way to really tell. So we're glad we're getting that taken care of!
Otherwise, we had a really nice, informative meeting with Dr. Kurtzberg. It was soooo good to see her! Molly warmed right up to her, and allowed her to feed her cheese (what else?) in the midst of our converstaion. Dr. K was really pleased with Molly's progress. She said her lungs sound good, her skin looks great! At this point, Molly remains in the 90th percentile for weight and the 10th percentile for height. However, her growth over the last three months is just what it should be for that time frame. This was encouraging. Dr. K reduced Molly's lab draws to once a month (Yipee!), and she also weaned and discontinued some more of her oral meds. We felt this was a very positive step. We also talked with her about future steps...getting her lines replaced with a port, among other things. We're still deciding when and where this will occur.
On an emotional end, it was a very fulfilling trip. It was so great to see everyone again, and to have them see Molly. So many of them said seeing kids like Molly is what makes them keep doing what they're doing... Her good health and smile brightened their day. She was, however, very shy at the beginning of the week... even cried outright at a few of her favorite friends, which just tore my heart apart. But, by the end of the trip, she was flashing her Molly smile to everyone again, and I hope she remembered some of their happy faces from her stay at Duke. We'll never know, I guess. I felt bad that I didn't have more time to visit with everyone.
To all the family members at home who pitched in at the last minute to help with a cold-ridden TJ, we thank you from the bottom of our hearts. It was so hard being away from him when he felt so miserable, but we knew he was well-cared for. Needless to say, it has been nice to be home again to be take care of both of our "babies".
Thanks for checking in, and for your continued prayers for Molly. Her progress is a sure sign that God is answering all of our prayers. I will be sure to share the other results as I learn of them.
Sunday, January 06, 2002 at 11:32 PM (CST)
I know, I know... I've been very late in getting a new update posted. Forgive me.
Our holidays were great- Santa was very good to us! Our quiet Christmas Eve together was wonderful... we truly have so much to be grateful for this year.
TJ, Molly, and I(John was out of town for the week) rang in 2002 around 5PM with a few pots and pans, and went to bed early. Wee hoo! I hugged them both and smiled to myself with excitement for this year. I know God has really looked our for us this past year, but I pray that will we continue to receive His blessings throughout 2002. What a year it was... I have learned so much, and I am so grateful for everything I've been given.
Well, let me tell you... our little Miss Molly is goin' to town these days. She is so funny! I found her today standing in her crib (she can pull up to stand now!) playing peek-a-boo with the shade. It is so great to hear her babbling away with her animals up in her bed. She just started doing this. (So much nicer than the wailing she used to do!)
This week also marked a big milestone with her speech therapist. Both therapists are starting to see some big changes in Molly's muscle control, toleration of foods and stimulation, and communication. Molly blew bubbles in a cup and sucked through a straw this week. She was very proud of herself! She is also signing more, too. Her latest sign is "please", which she does on whomever is holding her, and it is always to request a video. She is still a total TV bug! She loves her videos!!!! The signing is great to see, though. She really wants to communicate!
In addition to drinking from a straw, she's continuing to try new foods and textures. She'll have peanut butter and jelly for lunch now, and has even tolerated pretzels! Those new teeth are coming in handy, I think. She's feeding herself on occasion, too.
She continues to surprise us with more daring moves off and on the walker. She's not walking on her own yet, but we're proud of her curiosity to try new moves. She's doing really well getting up the stairs,going bonkers in her jumper, and she LOVES to stand next to the tub when TJ's in the bath. She bends over the side,splashes around and giggles at his antics... (However, she can't go in the tub until her central lines come out sometime in the next few months.)
We're going to Children's tomorrow for a check-in with the BMT docs. Outside of a rash under her central line dressing, there really aren't any concerns. Her labs have been coming back pretty good, and Dr. K even weaned some more meds this week! Yeah!
We're headed back to Duke for Molly's 9-month studies next Sunday, Jan. 13th. We have a very busy few days planned, but I am anxious to get there and see how Molly is doing. I'll share the results as I learn them. I can't wait to see all of the nurses, docs, and friends who are still there. I am very nervous about having Molly in an airport, though. Ugh. The germs, and yes, it's RSV season!
Not a day goes by that I don't think about how lucky we are to have this sweet little girl in our lives. She is such a punkin. I am so proud of her, for all she's been through, and all that she's trying so hard to catch up with. She's doing really well, in part, because she has so many people still praying for her. Thank you, one and all, for your continued support and love.
May your 2002 be filled with many happy blessings as well.
Sunday, December 23, 2001 at 06:50 PM (CST)
What a Merry Christmas week we've had! It's not even Christmas officially, and we've felt so blessed. The week started out with Santa, yes, the real Santa, appearing at our front door with a bag full of gifts for us. TJ just about blew a gasket. He had written a P.S. in his letter requesting that Santa make a special trip to our house before Christmas, so Molly could sit on his lap and tell him what she wanted. He knew she wouldn't be able to go to the mall... and Santa pulled through! Needless to say, it was magical... mostly for TJ, and for me and John to see. Miss Molly didn't care one way or the other, but we have the whole thing on video for her to see in future years. THEN she'll really get a kick out of it! What a special way to start the Christmas week. (Big thanks to our friends Nancy and Ralph.) That one will be forever stored in the happy memory bank.
All of Molly's nurses and therapists came to the house this week with arms filled with gifts for her. She is the luckiest little lady around. It is touching to see how much she is loved.
We enjoyed a Christmas visit with Molly's grandparents, her great grandma, and her great aunt last night. (The latter two had not seen Molly for a year.) It was a really fun night, we exchanged gifts, enjoyed dinner and some videos of TJ as one of the Wise Men (his big, non-speaking debut in the preschool pageant). Everyone was pleased to see Molly doing so well. Outside of the 5 teeth she is cutting, she has been great!
We will be spending Christmas at home as a family this year. Tomorrow (Christmas Eve), Molly will have her two IV infusions at home, and John and I will take TJ to the Children's Christmas Mass. We are so looking forward to celebrating Christmas this year, because we realize what a special gift we have. She's not under the tree, however, but on the stairs, in closets, bouncing, dancing, cruising along furniture...you name it!
We love you all and wish you the merriest of holidays! Enjoy spending time with friends and family, and know we are thanking God for all of your love and friendship.
Merry Christmas from all of the Birminghams!
Tuesday, December 18, 2001 at 04:46 PM (CST)
December 18th...
A day we'll never forget. Exactly one year ago, John and I received the news that our daughter had a fatal genetic disease... Hurler Syndrome, the doctor called it. We sat in her office and cried. The future was so uncertain. What would this mean for our family? For our Molly? Why was God challenging us like this?
What an unbeleivable 365 days it has been. We are now feeling so blessed to have learned all we have this year, and to see Molly doing so well. We realize the gift Molly's Hurler Syndrome has been to our family, and we are stronger because of it. We thank God for choosing us to experience it, and for giving us such strength to get through the treatment for it. We also thank God for giving us Molly and TJ. What lessons the two have them have taught us!
We could never have gotten through this year without all of the support our friends, family, and strangers have provided us. Thank you for continuing to care so very much about Molly and our family. God bless you!
Saturday, December 15, 2001 at 11:33 AM (CST)
Hello!
Thanks for checking in with us today. Molly is getting over her cold quite nicely. It's great to see her feeling better! She's still working on those 3 molars,and actually took a bite out of one of the slats in her crib! Yikes. Can't imagine the wood tasted that good. We've now covered the slats with hot pink coflex, an adhesive wrap. The nurses at Duke used to laugh at me as I found a zillion ways to use the stuff! Now Mol is stylin' in her crib!
The lab results from this week were good. Her counts are decent, and her levels are good. The c-diff and rotavirus cultures came back negative, so we're still not sure what's causing the toxic diapers. At least she's not fighting something... Maybe it's just those teeth!
Molly is looping the downstairs walking with her walker. It's so exciting! She can do the stairs much quicker, and is still jumping away in that jump-up. We hope she'll be walking within the month... how neat would that be for everyone at Duke to see?
She's also eating tons these days... still working on drinking milk, but we're pleased that she is eating a substantial amount. She still loves her cheerios and goldfish!
I added some new pictures for you to see. We all want to wish you a very merry holiday season. We feel so blessed to have Molly home with us. Thank you for all of your prayers for her. God bless you!
Monday, December 10, 2001 at 09:41 PM (CST)
Wow- is this the third update this week?
Just wanted to let everyone know that Molly's cold is improving. The antibiotic coupled with some cold meds have provided her much relief from the goopy congestion. It rears it's ugly head when she cries, but otherwise, she's looking better. Thanks for all of your good thoughts for her!
We went to Children's today for a visit. First, we met with Dr. Kletzel, head of the BMT unit, who thought Molly looked great. She was feeling much better when he saw her, and she definitely put on the charm. The only concern we've been having (in addition to the cold) is the effect all the meds are having on her digestion. Molly has had diarreah for about 2 weeks now. Dr. Kletzel offered doing a test to see if the c-diff (intestinal infection she had while in transplant) could be back, but Molly, ironically enough, was not able to provide us a "sample". Ha! She'll make a liar out of me every time! Overall, he was quite pleased with her progress, and sent us off with a smile.
Molly is now 31.5 inches and weighs 26 pounds, 4 ounces. This otherwise mundane information was great news to us, as she has grown another 1/2 inch, and is maintaining her weight despite the tummy troubles. Way to go, Molly!
From the Stem Cell unit, we (Doreen, our RN, came with us- thank goodness!) traveled downstairs to meet with the pulmonary docs for the first time. After giving them lots of info on Molly's history, they were able to say that they don't feel the need to follow her, unless an emergency arises. Her lungs sound clear, and she doesn't seem to be showing any signs of breathing distress. I was relieved to have met them, though, just in case we have to go back with RSV this winter. At least they'll know who Molly is.
The whole time I was talking to the doctors, Molly was showing off her newfound sign. She has watched us wash our hands so many times, that she now rubs her hands together to imitate us. It looked as if she was telling the doctors to wash their hands... pretty funny stuff. She gave them all a good chuckle.
I'll draw her labs again tomorrow (Tuesday). Let's hope they come back as good as last week! She's really maintaining good levels and nice blood counts. We finally got the speech therapist situation figured out. Molly now has 2 speech therapists! Kelly sees Molly once a week, and Taso sees her twice a week. They both seem to have a wonderful raport (sp?) with Molly, and have brought some great ideas to the table for helping her develop her speech.
We had a great time visiting the transplant house with my family yesterday. It brought back lots of memories for me, just talking to the families, and understanding where they were in the process and dealing with the emotions involved in getting through it. It was really good for me to be there. I miss all of the transplant friends I made at Duke. The house is gorgeous- what a wonderful benefit for the families there! I'm looking forward to returning soon to visit again.
Thank you for checking in with us today, and for keeping Molly in your prayers. We send you lots of love!
Sunday, December 09, 2001 at 12:52 PM (CST)
Hello!
Well, we knew it was inevitable... Molly has a terrible cold. It started last Wednesday, and by Thursday, it was full blown- she's a runny, goopy mess. We are so fortunate with all of the doctors who are looking after her, though. It took a quick phone call to our pediatrician in the morning, and by Friday afternoon, a doctor was here making a house call for Molly. The good news is, we caught it early. It is an upper repiratory infection with no complications in her ears, throat, or lungs. She was put on an antibiotic to prevent the cold from turning into a sinus infection, ear infection, or RSV, however. So far, she's hanging in just fine, but we feel so sorry for her when she's so miserable.
On other fronts, we are getting into the holiday spirit! This afternoon, my siblings and spouses are joining John and me to deliver a dinner and holiday gift bags to the Kohl's Transplant house at Childrens Memorial Hospital. The house is similar to a Ronald McDonald House, but it is only for pre and post- transplant families. It sounds really nice. When I was in the hospital with Molly, a local Durham church delivered a homemade meal once a month to the ward, and we so looked forward to it! We are very excited to meet the families and kids who have recently had transplants at Childrens. It feels really good to be on the other side of this "fence" and be able to give back a little.
Thank you for checking in on Molly, and keeping her in your prayers. We're hopeful she'll beat this cold without any complication.
Wednesday, December 05, 2001 at 08:46 PM (CST)
Happy Holidays! It seems like Christmas in July with this unseasonably warm weather! I think we're headed for a change, but it's been so nice to take Molly to the park this week. Oh how she loves those swings!
Molly's labs came back great today- she finally got the magnesium level we were hoping for. (It had been low in weeks prior.)It seems that going to the oral form in her bottles has done the trick! No more vomitting, either, so the steroid wean is still going down. In addition, Molly has had a burst of an appetite lately, and is not only eating like a champ, but is now taking bottles of milk! This has been a long battle with her, but she's finally agreeing to try it.
Speaking of trying new things, Molly surprised me with her latest trick the other night. As she sat peacefully watching a video on the living room floor, I went to help TJ for about 30 seconds. When a turned my head around to where she was, she was gone, so I looked further around the corner to the closet, and she wasn't there either. Thank goodness I thought to look up- yes, UP! Molly had climbed up four stairs and was quickly trying to turn the bend on the 5th... Oh my goodness! She is quick! Needless to say, we are thrilled with her newfound ability to climb, and we are now fostering it as much as we can. However, the gates have now found their way up from the depths of the basement, so we don't have any more surprises when we're not watching her. Otherwise, she is standing for 10-20 minutes on her own, and enjoying cruising along the furniture.
Lots of changes are going on! This week, Molly cut a molar. She is still trying hard to communicate to us, and is now pointing to things she wants. She points to her sing along video, and bounces on the floor clapping when we put it in the VCR. She loves it when we blow bubbles and POP them in the house. It's fun for everyone. TJ runs around like a nut trying to pop all the bubbles, and Molly laughs hysterically at his antics. She is even trying to say his name now!
Tonight, TJ put our shoes out on the stoop for St. Nicholas to fill them with treats. My heart was warmed as I looked at the collage of shoes: John's big work shoes, my tennis shoes, TJ's boots, and one little black party shoe for Molly. He didn't forget her, even though he realizes she can't eat candy like he can. I looked at the group, and had to smile. TJ is so concerned about Molly's well being. He makes me smile so much with his delight in making Molly happy. He looks out for her like a big brother should, but he is her best friend, too. He even made up a song about how his sister is "so special".
We are so blessed.
Thursday, November 29, 2001 at 04:39 PM (CST)
Molly had a visit to Children's Memorial today. The docs were really pleased with the way she looks. She was all over the place, into everything, and giving lots of smiles...putting on quite a show for the nurse. Her labs came back yesterday, and they look good, too. We're still working on her steroid wean, as we had to give her a dollop dose this past weekend. Unfortunately, she vomitted 6 times in about 90 minutes! It was scary at first, because there were so many possible causes that we couldn't pinpoint (tummy virus, reaction to her Methodone wean,cold?) We paged Dr. K, who decided to be safe by giving her more steroids. But after all the dust settled, we think the culprit was the sweet potatoes she ate, and nothing transplant-related. Whew.
She's hanging on to her mini-cold, but getting much more sleep these days (12+ hours a night!) As a result, she's been extra-cheery and fun during her awake hours. Molly's still enjoying clapping at the Christmas tree, but her new favorite pasttime is going through the basket of our past years' Christmas cards. She keeps herself busy forever, looking at the pictures and talking to the cards. (She also likes to fling them across the room... fun times for Mom and Dad.)
Molly is also working on growing, too! She's grown over an inch since we've been home, and her hair is really coming in! Even her nurses comment after not seeing her for a few days! We actually got a bow goin' this week! (which made mom happier than Molly).
She is a joy to be around, watching her investigate new things is priceless, and seeing her want to move faster and faster is amazing.
Thank you for checking in on Molly. Happy Holidays!
Sunday, November 25, 2001 at 03:34 PM (CST)
Hello from the Birminghams!
We hope everyone had a nice Thanksgiving. We enjoyed our turkey dinner and said many prayers of thanks for all we have been blessed with this year. It is still such an overwhelming feeling to realize all of the gifts God has given our family. We are so appreciative.
Unfortunately, the kids both came down with little colds just before the holiday. Luckily, they haven't caused too much trouble, just runny noses. But with Molly, we're watching for any symptoms that it might turn into something worse (sinus infection, RSV). Nothing has happened so far, thank goodness. As always, both children graciously shared their germs with their mom, who is now masked and suffering from a sore throat.
We were able to put up our Christmas tree this weekend, and tried to get the house ready for the holiday season. Due to an overwhelming response to superb advertisting, TJ thought it would be great to have our tree set up on none other than the "clapper". Needless to say, we set it up, and were all trying to get it to work. Molly thought this was hysterical to watch, and now, everytime she gets a chance, she starts clapping her hands! Fortunately for us, her claps are not powerful enough to turn the tree on and off, but we laugh everytime she attempts, as we sing "Clap on... clap off!".
On other fronts, all of Molly's therapists are really pleased with the progress she's making. We are headed back to Duke in January for Molly's 9-month studies, and we are so excited for them to see how well she's doing! We'll be there for 3 or 4 days.
The appointment last week with the eye doctor went really well. She said the cloudiness on Molly's corneas is all but gone, and her eyes look good. We'll get an additional test (with anesthesia) done while we're at Duke. We were so pleased! Molly was a trooper with all the drops in her eyes, and tolerated the exam nicely.
One last little thing to make you smile. TJ wrote a letter to Santa this week, and a few days after completing it, he told me he needed to write another letter to him. I thought he was just being persistent with his wish list of toys, but he wasn't. To our delight, he was writing to make sure Santa was aware of the situation in our house. He dictated to John,
"Dear Santa,
I have a little sister, and she's named Molly. She has cords (TJ's reference to Molly's central lines), and Santa, we can't have dirty shoes around. If you're going to come in here, we'll have a note by the window that explains.
And the reindeer shouldn't stay outside by the dirt, because of digging up the pipe- please have them stay on the grass.
Love,
TJ"
We wish everyone a happy holiday season! We'll be in touch again soon.
Monday, November 19, 2001 at 09:01 PM (CST)
Hello, all!
Molly continues to do well these days. We take labs tomorrow, and are headed to the opthamologist for an eye appointment as well. Being that this is the doctor who found the cloudiness in her corneas a year ago (which lead us to her diagnosis), we are hopeful that she may find some improvement post-transplant.
Molly has now been completely weaned of some of her meds, which is great. She is still taking her FK506 (anti graft vs. host), steroids, and anti-fungal meds, but every little bit of a wean helps. She also continues to get a monthly IV infusion of Immunoglobulin and Pentamadine, which will happen next week. We are thrilled that she is doing well enough to be off some of the meds.
Molly has begun to pull up to stand now! She is really showing lots of strength... and determination (but we already knew that). She even got a leg up on the stairs today- Uh oh! Her physical therapist, Missy, laughed as she said, "you might not like everything I teach her!" Again, we are so happy that Molly is progressing physically.
John and I were able to get away for a night in the city this past weekend. Aunt Caryn stayed overnight with the kids, so we knew they were in good hands. Our mini-vacation was exactly what we needed.
We are looking forward to a quiet Thanksgiving at home this year. TJ is already planning what will be on the menu at our celebration. We will miss being with our extended group of relatives, but we will cherish the time spent together with our own little family. Needless to say, we have MUCH to be grateful for... this year especially... and we count each of you among the blessings that have been bestowed upon us. Thank you for your unnending support, your continued prayers, and all of your love (and understanding).
Happy Thanksgiving to each of you. May God continue to bless you with family and friends, good health, and happiness.
Monday, November 12, 2001 at 08:57 AM (CST)
Closets and drawers. This is Molly's latest feat: she quickly crawls around our house finding drawers and closets to open and take apart. It is so funny! She is like a little mouse quietly disappearing from one room to the next, into the depths of our overstuffed closets. We find her only by the trail of goodies she pitches out behind her- like a bulldozer. I think she's looking for a secret passage that connects all the closets or something.
Other than her closet cleaning, Molly is also calling John "Da Da". This, of course, comes after many months of random da-da-da'ing, so we are very pleased to see the progression she has made."Da Da" is now isolated to that big, funny guy who sweeps Molly up into the air and makes her giggle like no other. Molly IS Daddy's little girl, and she's one smart cookie.
Physically, Molly is showing to be quite a risk-taker. She will dive head first off the couch to get something on the floor, and has even tried to let go of the coffee table when she is standing up against it. While my heart skips a beat everytime she does these new tricks, we're really proud of the strides she is making.
Thank you for checking in with us today, and for your continued prayers for our little lady. She is doing so well!
Thursday, November 08, 2001 at 09:38 AM (CST)
Hello, all!
Thanks for checking in today (and maybe days prior... I've been called a slacker already with the lack of updates- sorry!).
I am happy to report that Miss Molly is doing well! Her labs came back normal AGAIN this week, so we are thrilled.
We have a nice staff of nurses coming to the house on a daily basis to help out, which is a godsend. Molly is getting used to all of the different faces, not to mention the 4 therapists she is getting to know. When I'm around, she seems to have more breakdowns when others are working with her, but I can't blame her. She is doing her best to be cooperative with all these new people, but I think she gets a little freaked out every now and then, and just needs a hug from a familiar face.
Molly is enjoying sitting on the big red ball that Sarah (OT) brings to the house. They bounce and sing and rock and roll. Missy (PT) got her money's worth last week, when out of the blue, Molly heard her voice and started screaming crying for 45 minutes. We still can't figure out why. This week was much better, however. (I was afraid Missy wouldn't come back after that!) Molly had her first speech therapy session yesterday with Kelly. They had a ball, and she got Molly babbling and talking. Now that Molly can motor around so well, she decided she had enough of therapy and just kept crawling away from Kelly. She is now turning corners and going down hallways to investigate the house. Pretty funny stuff.
We had to put a little halt on the Johnny Jump-Up this week, as it is making Molly throw up. She bounces so high now, she upsets her stomach, and she cries incessantly once she realizes what has happened. It's so sad!
We are continuing to wean some of her meds down, which is a welcome change. For the most part, Molly is handling it well. Her rashes are gone, and her central line site looks good. She is continuing to try new foods, and even had a little milk last week! We're hoping that trend continues. Her labs and her weight have proved her eating habits to be beneficial, so we're happy.
I was lucky enough to get away last weekend for my annual Girls Weekend, with some good friends from Miami. It was a wonderful weekend, filled with lots of laughter, a few tears, lots of chatting, and of course, spa treatments (Yesirree!) . Exactly what the doctor ordered for me. John was a trooper taking care of TJ and Molly all weekend. He even helped TJ orchestrate a "welcome home" picnic for me in the backyard for the 4 of us to enjoy. I am relishing in these "family" moments more than ever. It was the most gorgeous Fall day...TJ, John and I kicked around the soccer ball and played football while Molly unloaded TJ's Halloween pumpkin filled with candy.
We continue to count our blessings every day, as Molly progresses with her health and development. John bought me a hat that I wear often, which simply states:
"Life is Good."
It really is.
Thank you for your continued support and love for our family.
Monday, October 29, 2001 at 09:44 PM (CST)
Hello!
Thanks for checking in today. We don't have too much to report on the Molly front, except that she's doing well. We're very happy with her labs, and therapies are starting to settle into a schedule.
We've been juggling some of Molly's meds, due to some vomitting and rashes that have appeared lately, but nothing terrible. She is moving and shaking more than ever... and really showing us her sneaky side! Ha! Her latest love is pulling all the Disney videos off the shelf, then systematically emptying each tape from it's case. She is so funny! She is bouncing like crazy in her Johnny jump up, and almost has the "pull up" to the coffee table down pat. Our favorite new Mollyism is her rendition of the "Itsy Bitsy Spider". We'll catch her inching her fingers toward the sky, even when she is alone in a room- it's great to see her mind progressing!
Thank you for your continued prayers for Molly. Our love to you all and many happy wishes for a safe Halloween! There are new pics for you to enjoy.
Monday, October 22, 2001 at 04:08 PM (CDT)
Wow- Fall is here.
We celebrated Molly's 18-month birthday this weekend, as she didn't have much of a 1st birthday celebration in the hospital. It was fun! TJ and I shopped for the decorations together, then, the four of us ate cake and sang to Molly, as she dug into the icing. TJ wrangled John and me into some pretty hilarious games of pin the tail on the donkey and musical chairs. (He was the party director.) I'll put some pictures on the site as soon as I get them on a disk.
Otherwise, we are still trying to deal with some minor glitches on the homefront. In an effort to find a bellied sewer pipe, a plumbing company dug a 6 x 8 foot hole in our front yard last week, only to determine they were in the wrong spot, and actually want to bulldoze our driveway instead. OOPS! They left the hole open overnight, which was a little scary for us, considering Molly's suseptibility to any airborn fungus, mold, etc. Molly should not be around any kind of construction, so we're weighing all our options. Bulldoze the driveway or have sewage back up into the house? Hmmmmm.....
Molly's therapy (or lack thereof) situation is getting resolved.... but slowly. We've been a little let down by the delay. She is scheduled for PT 3 times a week, and OT is TBA. Speech is still in the works... we haven't even been told we have a speech therapist yet.
Molly is doing well, however, despite these minor bumps in the road, and is getting smilier and smilier every day. She continues to crawl, tries to pull up, and loves to be tickled. She adores going on walks outside, and we even took her to the park for her first ride in a swing! (After we attacked it with antibacterial wipes and covered the chains that she would touch.Luckily, there were no other kids there,which allowed us to take her.) Pics will follow on that adventure, too. It is so nice doing "normal" things as a family again.
TJ, being his typical 4 year-old self, continues to keep us on our toes. He is still taking very good care of his little sister. He is vigilant about telling us when she pulls her mask off in the stroller, or when she is getting ready to crawl where she shouldn't be. He is a big help. He loves to have Molly go to sleep next to him in his bed at night, even though she is afraid of the dark. "It's ok, sweetie," he says to her amidst her pleas for retrieval from us.Out of the whole family, TJ was the most thrilled about the bulldozing plumbing extravaganza last week. We couldn't have peeled him away with a crane, he was so enthralled. (I just wish John and I could've shared his enthusiasm.)
We're looking forward to Halloween. This year,TJ and Molly are going to be Pooh Bear and Piglet. The verdict is still out on whether Molly will be able to go outside (weather and kid ratio permitting), but she's got the costume, and boy it is fitting!
I can't tell you how touched I am by the continuing notes I read in the guestbook. Thank you for sticking with us. We've made it this far, but Molly still needs your prayers for continued good health through these next few seasons. Enjoy the onset of Fall... we love you!
Tuesday, October 16, 2001 at 03:30 PM (CDT)
Hello, all!
Things are moving right along. Molly is becoming more familiar with her new surroundings... especially her big brother and dad. They both make her laugh hysterically with their antics... She just loves all their attention! She is really crawling up a storm now, and walked the length of the room with a walker yesterday! Watch out!
Today, we took Molly to Children's... we met with the BMT docs and had her labs drawn, and then we met with Dr. Burton, the geneticist who diagnosed Molly. It was so nice to see her. Boy, the last time we saw her was under such different circumstances! We were such a mess the day we received the news of Molly's diagnosis. But what an incredible person to deliver it to us. She is still the warmest, most caring and personable doctor. She was thrilled to see Miss Molly, and was very pleased with the hurdles she's overcome.
We met the second of three BMT docs today, Dr. Haut. He was also very nice (everyone at Children's is!) and pleased with Molly's labs and how she seems to be doing. We will, of course, check back with Dr. Kurtzberg on all the details, but things are moving along well. We're still going to be busy meeting all the other doctors there (orthopaedic, pulmonary, opthamology, neurology) in the next few months. We are glad that we feel very confident in the BMT group. The only person we didn't get to meet was the tranplant dietician. I am looking for different fluids to offer Molly, as she will only take her "cocktail" of Resource berry juice and fruit flavored Pedialyte! She's going through 4 bottles a day, now, and she needs a change! However, milk and dairy fluids are just not floating her boat. I hope the dietician has some good recommendations. Irene went with us to the hospital, which made the trip that much smoother. It was nice to have that extra set of hands in the car, etc.!
We met Molly's new occupational therapist, Sarah, yesterday, and we are hoping to meet Missy, her physical therapist, this week, too. We're still searching for a speech therapist. In addition to our insurance case worker, the social worker at Childrens hopped right on the case for Molly after I called her yesterday. We so appreciate her help, and hopefully we'll have one lined up soon.
Miss Molly was very happy to see everyone at the hospital, but never had a chance to get a nap in, so she is sleeping soundly now. It was a big day for her. I am so pleased that I can continue to report good things about her health.
John and I were able to go out on our first "date" in quite awhile. Thanks to Aunt Julie and Eric for coming over to babysit the kids! We had a great time being out, and taking advantage of the new downtown area near our house.
Thank you for your continued prayers and good thoughts for Molly. As always, we send you all our love!
Wednesday, October 10, 2001 at 10:59 PM (CDT)
Day +201
Each day has brought a little more normalcy to our lives. I've been lucky to have Irene, our home health nurse, coming to the house to take care of Molly this week. She is wonderful. Molly has quickly become familiar with her, and enjoys their time together. Her being here has allowed me to get more settled, organized, and relaxed, too. I've been able to run errands, go out with TJ, and take care of many details around the house, which would otherwise take me years to accomplish.
We're still working on therapy for Molly, but I hope we'll see a physical and occupational therapist at the house by the end of this week. I drew Molly's blood from home on Tuesday, fed-ex'd it off to a lab, and got the results faxed here today. What a convenient process! Her labs look great! I was so pleased. Molly is now off IV fluids at night, and is maintaining stable levels of electrolytes, blood, and weight!
Otherwise, her skin rash is diminishing as well. Dr. K increased her FK506, the anti- GVH drug that was being weaned, and we've been applying lotions, too. I guess we'll take the wean a little slower this time. Her central line site is also improving!
Physically, Molly is continuing to crawl, and has started to cruise along the coffee table and couch. She takes little baby steps, but she's doing it! She seems much more interested in the remote, our car keys, and the mail than ever before... so we know what to put out as bait! And I've already given up hope on the living room bookshelves... she bulldozes the neatly stacked books and other items quickly and easily. They are thrown around the room like a tornado. Funny how it makes me smile, though.
Thanks for checking in with us today. We're so happy to report all this good news! Please continue to keep Molly and all of our friends going through the transplant process in your prayers.
Sunday, October 07, 2001 at 09:55 PM (CDT)
Day +198
Wow- what a week it has been. Thank you all for checking in again, and for the many email messages I've received this week. We are doing well. Finally getting settled in, organized, and ready to live life at home. Molly is improving everyday. She is eating tons, and sleeping almost through the night. She is also crawling across the floor... and gaining speed with each effort. It's so much fun to see! TJ is such a good impetus for her. She is already trying to be like him, and he gets a kick out of seeing her do what he wants. We had a nurse come to the house 2 days last week, so I was able to go apple picking with TJ and his preschool class on Friday. We had a blast! It was such a treat to spend time with TJ again...
Today was a special day for our family. It was a gorgeous fall day, and our very good friend (John's basketball teammate from high school), Mike Purcell, ran the Chicago Marathon in honor of Molly. We haven't heard how he finished yet, but we thought about him all day long as we watched the television coverage of the event. What an amazing tribute to our daughter- running 26 grueling miles in her name ...we were touched beyond words.
We are planning to start Molly's therapies this week. Our home-health has covered everything from drawing blood at home to private-duty nursing... hopefully, the therapies will fall into place without a problem. Everyone has been wonderful to work with, so the transition has been mostly pleasant, just busy.
Molly is starting to show signs of a slight skin rash. This is normal as she weans off the anti -GVH drugs. She also has a red ring around her central line site, so we took a picture with a digital camera and sent it off to Dr. K, and we'll keep an eye on it. Hopefully, it's not any type of infection.
Thank you for continuing your prayers for our family and for Molly. We thank God for all of our friends and family who have helped carry us through this journey. God bless you!
Wednesday, October 03, 2001 at 10:14 PM (CDT)
Hello from Arlington Heights!
We made it home safely last Sunday. As we drove up our block, every tree had a large pink bow tied around it for Miss Molly, and many of our neighbors were out on their front lawns waving and welcoming us home. Ours was the final house on the block, and it was filled with heartfelt banners and balloons, and one very excited little boy jumping around the lawn. We could see TJ from the opposite end of the block. His enthusiasm brought tears to our eyes. Finally...we are a family again.
Once inside, I was presented with an amazing collage of welcome home letters in a book, a trip to the grocery had been made, and dinners and dessert were already prepared. John had worked really hard to get the house ready for Molly's arrival. It was completely antibacterialed- air ducts were cleaned, hepa filters were running, and the floor shined. What a nice feeling. I walked around in somewhat of a daze... I couldn't remember where things were, but everything was where I left it, I guess.
The transition has been less overwhelming with each day. I am still trying to get out from under all the boxes we packed.... while making doctor's appointments for Molly, arranging home-health visits, and getting back to our daily routine of life. John went back to work today. He was a big help during the last week. We couldn't have gotten home without him.
Molly is doing well. She still isn't sure about this place we call "home", though. She's not too fond of her bed yet, or maybe it's that she knows she's missing something with that big brother around. She absolutely lights up in his presence, it is awesome to see. She is getting more teeth, which has led to some sleep-deprived nights, but overall, her health is good. She just needs some time to realize she's ok where she is, and that we're not leaving her. She thoroughly enjoys "wrecking" our evening ritual game of Old Maid on TJ's bed. Hee hee! Today, TJ's job was to watch Molly on the couch, and call me if he had to turn his eyes away from her... When I came back in the room, all I could see amidst every pillow in our house, was Molly's cheeks innocently peeking out from the pile. It was hysterical! TJ responded, " I thought she'd stay on the couch better this way."
Albeit busy, we are all VERY happy to be together again. We feel so blessed. We would like to thank everyone who participated in our welcome home, be it by your presence at our home, or in your good thoughts sent our way. Also, special gratitude must be shared with all of you who have so nicely refrained from calling us or visiting. I never thought I'd thank someone for that, but it has really been helpful to have time alone as a family... to regroup and get reacquainted. (We will emerge into the world again soon, I promise!) Most importantly, thank you for your continued prayers for Molly.
I will update you as often as I can... maybe every week or so from now on...
We love you!
Jenny, John, TJ, and Miss Molly
Friday, September 28, 2001 at 06:46 PM (CDT)
Well, we got Dr. Kurtzberg's final blessing today. We are really going to close the door on our journey in Durham, and are hitting the road to Chicago early in the morning. This being my last entry from Duke, I decided to go out with a bang. This is a long one, so grab a cup of coffee or a diet coke. Thank you for reading it.
When we received Molly's diagnosis last December, John bought me a personal journal to keep my thoughts. I have written privately it in throughout the last 8 months, documenting my feelings and emotions. In reflecting on the experience we've had at Duke, I thought it would be appropriate to share with you some thoughts from my personal journal first..
December 24, 2000:
"It's Christmas Eve- cold and snowy... We've just learned of Molly's Hurler diagnosis a week ago. I went through many emotions upon hearing the news: sadness, doubt, grief... but mostly fear. I am so scared to live the future. I don't know what it holds for my sweet little girl, or our family, and that has been difficult to deal with...
"My heart is full, my smiles are few, and all I can do is pray- that in His major plan for me, God will hand me only what I can handle. I trust in Him that I was meant to raise a child with special needs... and do it well...
"I know that someday, whether it be during or at the end of Molly's life, I will thank Him for allowing me to experience the life He planned for me. I look forward to learning from Molly more than anything. She is a little person with a very big heart, and a determined little body. She has something very special to give to the world- and we're going to learn about it one day at a time."
September 29, 2001:
Day + 190
Since arriving in Durham, NC, on
January 23, 2000...
I have learned of more medical terms and procedures than I'd ever guess I'd know.
I have felt the fear of "not knowing" how Molly's journey will end.
I have felt the heartache of missing the other half of our family. I have listened to TJ cry on the phone and ask countless times, "when are you coming home, Mommy?"
I have experienced the pain of hearing a child's agonizing screams in a room down the hall.
I have watched parents fall apart upon hearing bad news about their child's health.
I have struggled with my faith and those who have instilled their religious beliefs on Molly's situation.
I have listened to parents tell their child's heart-breaking story, and I shared their feelings of hope and fear for the future.
I have heard a code blue alarm.
I have felt my heart drop with fear of the unknown: with infections, readmissions, and tests.
I have felt the fear of death looming in the future.
I have witnessed the depression, loneliness, and challenge of "not knowing" what is wrong.
I have experienced the loss of more than 20 beautiful children, and felt a terrible pain in my heart for their grieving families.
On the other hand...
I have watched nurses, doctors, and special visitors make children laugh.
I have seen therapists push children to regain their strength.
I have admired parents' stamina and unconditional love for their child.
I have smiled watching children pedal bicycles through the hallways of the BMT ward.
I have felt touched by all of the people who loved Molly as their own.
I have waved at children and their parents on daily walks with IV poles in tow.
I have become completely unafraid of bald heads and green masks. (and yellow gowns, too!)
I have marvelled at the love and smiles Molly gives to all the amazing people who took care of her.
I have watched the growth and flourishing of the Duke gardens for 6months.
I have heard the words, "Molly grew cells!" and cried in amazement at the miracle unfolding.
I have learned that life does go on... from many families of children with Hurlers and other diseases.
I have felt an unbelievable outpouring of support... from family and friends, and from friends of family and friends,from the staff at Duke, and from complete strangers.
I have felt the warmth of compassion and love from every single person who cared about how I was doing during this experience.
I have prayed...
for my daughter's health and well-being.
for our family to remain strong and in tact.
for God to carry out His plan for Molly through me.
for strength, courage, and patience to take one day at a time.
for God's spirit to lift Molly through the hard times.
for the family that saved Molly's life by donating cord blood.
for all the people who have been so generous to us, both emotionally and financially.
for all the doctors, nurses, therapists, staff, and friends who have loved Molly so much...taken her under their wing, and tried everything they could to make her life a success story.
for all the families of and the children who are afflicted with Hurler Syndrome and other rare diseases whose only chance at life lies in the hope of a cord blood or bone marrow transplant.
for all the families who lost their child in the tranplant process. I continue to pray to those little angels I met, who are now happy and at peace in heaven.
I have learned...
to be open and flexible. To change, to uncertainties, to life, to a future.
to be honest... with myself and with others. I now know that life is too precious to take for granted, and whatever can be said or done to make life better- should be.
to be humble. I have accepted more love, more encouragement, more gifts, more support, and more acts of kindness than ever before in my life. And I have struggled with the fact that I will not be able to write a thank you note for each and every gift that has been so generously shared.
to be positive. I have tried to see the good in every situation, no matter how bad. I have learned that God wraps gifts in disguises sometimes.
to be patient. I have waited for countless hours, for countless procedures, and for countless appointments for which I have always been on time. I have learned that impatience is a waste of energy, and time is a gift given to us. I have learned to use this gift of "extra time" for reflection and prayer.
to be assertive. (This was a big one for me.) I have stood up for Molly when I thought she needed someone to speak for her, and I have expressed my concerns to people who I thought knew more than me. Following my instincts is what led us to her diagnosis. I am thankful I had the courage to continue to listen to my heart.
Most importantly,
I have witnessed my daughter's incredible fight for her own life.
I have watched her struggle through too many procedures and surgeries to remember, seen her suffer the side effects of chemotherapy and other drugs, helped her through blood infusions, nausea, vomitting, diarreah, losing her hair, losing her strength, losing her voice, losing her appetite, and losing her smile...
but I have also seen her determination, her endurance, her resiliance, and her desire to overcome it all... time and time again. I have witnessed Molly's first post-transplant smile, giggle, clap, dance, and babble. I have seen her remember patty-cakes, and so bigs, da-da's and cheerios. I have observed her excel in physical strength and stamina, and try so hard to do the things she wants so badly to accomplish.
I have stepped back and seen the unbelievable ripple of goodness Molly's life has brought about. She has inspired so many, she has restored people's faith in God, and their interest in prayer. Her plight has given birth to new friendships while rekindling old ones. The spirit of love and communication spawned by her experience has reached across states, nations, countries, and continents.
It is that unbelievable amount of goodness that I want to share with all of you...and on behalf of our family, thank you from the bottom of our hearts.
We are very thankful for...
Molly's extended family... and all of the loving sacrifices they made on our behalf.
The friends who put together "The Friends of Molly Birmingham" fund, as well as those who collaborated on the Molly Bowl 2000, The letter campaign, and held raffles in her name.
The gift of a laptop computer from a group of dedicated and giving friends.
Co-workers at Discover Card and Learning Resources, who put together an amazing support system for us.
Jan and Tom Myers, and Our Lady of the Wayside Parish, for the bone marrow drive they held in Molly's name.
Every single donation generously given to Molly's fund.
The gifts of airline miles, phone cards, and gift certificates.
Family and dear friends who travelled many miles to come visit and help out in Durham.
Churches, prayer groups, and prayer chains who continue to pray for Molly.
The caringbridge website.
Nurses from the BMT ward who have "gone the extra mile" for Molly, and become cherished friends to our family.
Allison, Molly's best buddy, who volunteered numerous hours to help in many ways.
Joan and Pat Fox, who volunteered much of their time and love to Molly, so I could get a break.
Decorations for Molly's hospital room, and Decorations that made our apartment a "home".
Amazingly thoughtful gifts and packages put together to keep me smiling.
Donations of delicious dinners at restaurants here in Durham.
Having our van here (via Uncle Bob).
Molly's crib from her Ahern cousins and her highchair from gramma's house.
The unbelievable gifts of clothes, toys, books, and stuffed animals for Molly.
Countless cards, emails, notes, packages, gifts, and cheer for Molly and me in Durham.
All the inspirational devotions, masses, prayers, holy medals, rosaries, and holy water and oils shared for Molly.
Every individual thought and prayer that was given up in Molly's name.
Neighbors at home who spent hours tending to my gardens for me.
Babysitters and friends for TJ, who, as a result of your love and devotion to him, came out of this unscathed and a very compassionate little boy.
Every new friend I made, who gave me support, and touched my life during this experience.
Dr. Joanne Kurtzberg, the most amazingly smart, loving, kind doctor in our world.
An ever-loving God, who loves us dearly and strengthened us through this experience.
Molly has undoubtedly taught us abundant lessons on overcoming obstacles with strength and determination. She introduced us to the world of Hurler Syndrome, and has made this life-challenging experience life-changing...with her sweet disposition and loving personality. I have so many people and things to be thankful for... but the most precious gift I am grateful for is Molly. I am so proud to have her as my daughter, and I look forward to seeing her live her life to restored health... one step at a time.
Once again, thank you all, for reading, for caring, and for being there for us. Although this leg of our journey is complete, there will undoubtedly be new obstacles for us to overcome as Molly grows. I know Molly will handle whatever comes her way, and I am no longer scared of the future. When she is old enough to understand, I will share this beautiful story with her. You have touched my life so profoundly through your love for our family. Thank you.
P.S. There are new pictures!
Wednesday, September 26, 2001 at 09:49 PM (CDT)
Day + 187
Wow. Things are moving along. We saw Dr. Kurtzberg on Tuesday in clinic, and details are being set in motion for our return to Chicago this weekend! John is flying down tomorrow, and Grampa B. is also driving down to lend a hand (and an empty car!)
Even after giving a ton of stuff away here, it is amazing to see all that we've accumulated!
Molly is doing well. She is into everything! If she's not dumping a box of cheerios over her head, she's pulling 500 diaper wipes out of their container. It's pretty funny! Her central line site is a bit irritated, which is the only thing worrying me. I've been changing her dressings three times a day, applying an antibiotic cream each time, in hopes that it will heal before Friday. Molly is very much in her "I'm so busy I can't sit still for long" mode these days, which is a good thing.... just not during dressing changes. It has been a challenge, to say the least.
We have an appointment to see Dr. K on Friday afternoon. She'll go over all the details about our discharge, and give us as much info as possible for going home. One thing is clear: germs are Molly's worst enemy. Her immune system is working at about 25% capacity right now. Bringing her home, into a new environment, is going to challenge her system. But bringing lots of new people near her will shock her immune system even more. It is for that reason we hope all of our friends and family at home understand our hesitancy to have visitors come over right away. We've just come so far... we'd hate to jeopardize Molly's health at this point. We'll have many, many details to work out so that Molly will continue to see three therapists, home health nurses, her pediatrician, and doctors at Children's... That's a lot of new people in her life- right off the bat! Please bear with us as we transition back into our life post-Duke. We want nothing more than to see all of you and celebrate our homecoming... we'll just have to take it slow, and be very cautious about germs. Thank you for your understanding.
Otherwise, Molly's engraftment test shows she is still 100% donor! Her enzyme levels increased, which is also good news! We'll get the other test results when we meet with Dr. Kurtzberg on Friday.
Thank you for all of your support and love. It's hard to believe our return home is in the near future. We are so grateful for all of the prayers you've sent up for Molly and our family. Hopefully, Saturday will be our departure day!
P.S. Happy 40th birthday to Molly's Uncle Tony!
Friday, September 21, 2001 at 04:58 PM (CDT)
Day +182
I'm breathing a sigh of relief after this whirlround of a week. It's been filled with a lot of back and forth to the hospital, and lots of patience-trying experiences. However, as frustrating as the week was, I look forward to hearing the results of all the tests Molly underwent. She seems to be doing well.
Today topped off our week of tests with an echocardiogram of her heart with a bonus visit from the opthamologist. After a miscommunication between the two, Molly sailed through the echo without anesthesia, and was put through the ringer with the opthamologist as a result. I gotta hand it to the Dr. who gave it a great shot. Sticking a pointed object into the squeezed shut eyes of a screaming, crying child is no little feat. We were finally exhausted from trying, and just had to physically hold Molly down on the table. What fun. The good news is, he did get the pressure in both of her eyes, and they improved from before transplant. We didn't get any info on the clouding of her corneas.
Molly had speech and occupational therapies at the apartment today. She's progressing well with both, and charms her way through "not" doing what she doesn't want to. It's pretty funny to see. I am so grateful to these wonderful therapists and their love for Molly. They are one of the many blessings we will miss when we leave.
Unfortunately, Nancy had to cancel her trip to Durham due to a cold. We're spending the weekend packing up boxes to send home, and I have lined up a couple of people to come over so I can get out for awhile. It seems like a lot of people are coming down with colds around here, too, which has me very nervous. I'm happy to keep Molly in her "bubble", so she'll stay well. Albeit progress, Dr. K's news that Molly's immune system is only 25% recovered at this point reiterated to me just how vulnerable she is to every little germ out there.
Thank you for checking in with us today. We appreciate your continued interest in our journey and in Molly's well-being. We may be looking at our last weekend in Durham!
God bless you all for your unnending support and love.
Wednesday, September 19, 2001 at 07:36 AM (CDT)
Day +173
Good morning! Just writing in a quick update to let you know some big news... Molly crawled last night! I don't think she even realized it, but you would've thought we won the lottery by the way I was acting. She responded to my antics with a very proud grin. I am really anxious to see if she continues with it today.
Our week has been busy, with extra appointments and tests. Monday's crying vital capacity test proved that Molly's lungs still are not quite up to snuff. Although her oxygen saturations are good, her pulmonary functioning is much better after a breathing treatment. (It went from 76% to 96% after the treatment.) So, we've gone back to nebulizers three times a day.
Our visit to the orthopaedic doctor yesterday didn't tell us much. The x-ray shows that the curve in Molly's back (called a kyphosis) has worsened. I was really surprised to hear this, because I've been commenting on how much better it seems. However, when the doctor saw her in person, she was sitting up, and he felt that the x-rays were inaccurate. They took them while she was sitting up, and perhaps she moved or bent over when the picture was taken. We will revisit this in three months to see how she is doing.
Molly also had a LOT of blood drawn yesterday for various tests: enzyme level, immune functions, engraftment, etc. We won't be seeing results for a bit on those.
On the visitor front, Nancy is due to come down at the end of the week. We'll be packing things up here at the apartment. John comes down next Thursday. We hope to have a "wrap up" meeting with Dr. Kurtzberg. I honestly don't know how I am going to be able to muster up a goodbye to her. She has made SUCH a difference in our lives, and obviously, in Molly's life... a simple goodbye doesn't come close to expressing how I feel.
Let the emotional roller coaster begin. While going home is a celebration beyond words, leaving all the people whom I've come to know (and who have shown us so much love and care) here is going to be tough.
Thank you for checking in with Molly and our family today. Please... say a very special intention for a friend who is going through an involved heart surgery today. I know all of your good thoughts will bring him strength.
God bless you.
P.S. A belated happy birthday wish goes to Aunt Patty for her big day yesterday. We love you, Pats!
Sunday, September 16, 2001 at 09:14 PM (CDT)
Day +177
Hello, all!
Today was a good day for us... Molly's tests came back negative (so far) for any tummy bugs. We went to the BOPP room for another dressing change, and saw Dr. K again. She told Molly to "behave herself " so we could go home in a couple of weeks!
After our trip to the hospital, we went to McDonald's drive thru for french fries, and the bag was not even on the passenger's seat before Molly started screaming from her car seat for them! She cracks me up.
Tomorrow starts Molly's battery of 6-month post-transplant tests. Molly has her crying-vital capacity test in the morning, an appointment with the orthopedic doctor on Tuesday, and an echocardiogram of her heart on Friday. Next week, she'll see the opthamologist for an eye check. In the midst of all these tests, they will be taking lots of blood to determine enzyme levels, engraftment, and immune functions. She will also see her three therapists during the week as well.
Thank you for checking in on Molly's progress. A special thank you goes to all of our neighbors on Evergreen Avenue, who held their annual block party today. I thank you for all of your support and love for Molly, and all the care you've shown our family throughout the past 8 months. We can't wait to come home !!!!!
God bless you.
Saturday, September 15, 2001 at 04:09 PM (CDT)
Day +176
Not that this is a pleasant issue to read about, but it is our life, nonetheless. Today was a "code brown" day (the name stolen from Molly's occupational therapist, a father of 2 girls)... I have patiently waited for Molly to produce a dirty diaper, so I can run it, without hesitation, over to the hospital to be tested. I feel for the person who has to be on the receiving end of this mission.... I would've handed them a clothespin with the evidence if I could have...it is not a pretty site. Lately, the toxicity of her diapers are almost melting holes through the ziploc bags in which I place them. I hope it's because she is eating more food, but I don't want to take any chances. She has been on antibiotics for over 2 months now, and they can reap havoc. We want to rule out any infection or virus growing in her little tummy as we head into the homestretch. Keep you fingers crossed that today's results come back negative.
Dr. Kurtzberg is the attending doctor on the BMT ward this weekend, so in addition to our visit with all the nurses, we got to see her today! She believes that we'll be going home toward the end of September. She was so pleased with Molly today- Molly let Dr. K hold her, and she gave everyone a very hearty wave goodbye (coupled with a little dance) in her stroller when we left. She got big applause for her performance. hee hee!
Otherwise, Molly's spinal fluid test results came back negative for any infection, which is wonderful news. (They will continue to observe them for any growth in the next few weeks.)Her pressures indicate another shunt is not necessary, too. She has a number of 6-month post-transplant tests scheduled for the next week or so, and during that time, she will be weaned off many of her meds... all in preparation to go HOME. I really think it's going to happen!
Molly continues to do so well.. She is playing, eating, drinking, sleeping, trying to talk, and wanting to move... ever so much more each day. She also made it clear today, by her reaction to the Elmo video we played at the hospital, that I have been watching way too much of Katie Courik and Peter Jennings all week. She was smiling and dancing in the bed as it played, and she screamed when the video ended. Who could blame her?
Thank you for checking in with us today, and thank you for your continued prayers for Molly's return home. After a week of such devastation and sorrow in our nation, I feel blessed to be privy to the wonderful smiles Molly is sharing. She continues to teach me so much.
Thursday, September 13, 2001 at 06:35 PM (CDT)
Day +174
Well, she did it again! With one more surgery under her belt, Miss Molly is playing peacefully tonight. She handled the anesthesia beautifully, and her spinal tap yielded great initial results. Her opening and closing pressures were the lowest yet- which helps her case for not needing another shunt! When I came into the recovery room, Molly was crying and raising her arms up to me... this was a first, too. It melted my heart. She is growing up, and becoming more and more aware of her surroundings. Not too soon after, we were cuddling in the rocking chair and she gulped an entire bottle! She began to play patty-cake and read books before she nodded off for a quick nap. I was soooooo pleased! She continues to make all of this so easy for me. I love her beyond words.
The only "almost-glitch" that took place had to do with the dressing on Molly's new central lines. It was saturated with blood upon leaving the recovery room, and after requesting it be changed, I was told to keep an eye on it. Thank goodness, Sue, one of the bone marrow nurse practitioners, came and looked at it. She understood my worries, and reiterated what the recovery nurses told me. However, after she walked us down to the pharmacy to get Molly's prescription, she said, "let me just check that dressing one more time before you leave." I agreed, and boy was I glad she decided to! The dressing was oozing blood, which had dripped down Molly's tummy. I don't know how I would've reacted had I gotten home and found this! She immediately took us up to the bone marrow clinic and fixed her up. Whew! I felt much better, and will be able now to see if the bleeding is continuing through the night. Thank you, Sue! (Just another example of how the bone marrow team here goes the extra mile for our kids. It is amazing.)
Thank you all for your extra prayers for Molly today. I cannot tell you how much they carry me through days like this. Even though this is her 6th surgery, it is never easy to leave her on the OR table anesthesized like that. My heart leapt when I finally got to see her... crying, moving, and okay in the recovery room.
She continues to amaze me...
Let the countdown to Chicago begin!
Wednesday, September 12, 2001 at 04:33 PM (CDT)
Day +173
Wow. After the events of yesterday still reel through all of our hearts, I find it difficult to write about our seemingly small daily routines in NC... As devastating as the terror is, I look to it as another opportunity to count the little blessings in our lives. (John was not in NY on Tuesday, an otherwise commonplace business destination for him.) Our prayers go out to all of the victims and their families across the nation, especially those employees at Morgan Stanley, with whom John was associated through Discover Card.
Briefly, I'll tell you how Molly is doing. We've had a busy week! Her ultrasound came back clear- good news! Her CT scan showed no changes, which is more good news. Today, Molly spent over 3 hours being evaluated by a team of a developmental neurologist, a psychologist, an audiologist, and a speech therapist (I think I got all those correct...) She held up pretty bravely, without a nap or a meal. She seems to be progressing in all areas, but we'll wait to get the report at a later date. No news is good news.
Tomorrow's surgery is scheduled for 10:15 AM. She will be under general anesthesia. Molly will have her central lines removed, have another double lumen placed, and have a spinal tap (to gauge her opening pressure and to test to see how the infection is doing). No word yet on whether we will be spending the night in the hospital... that remains to be seen per her recovery status. Unfortunately, John will not be accompanying us for the surgery. His visit had to be postponed due to the events of yesterday.
Your prayers would be greatly appreciated for this last hurdle in Molly's journey. Please pray that Molly is extubated successfully, with no complications during the procedure. Thank you for checking in with us... in light of all that has occured in our nation this week, we appreciate you remembering us. God bless you.
Saturday, September 08, 2001 at 10:29 AM (CDT)
Day +169
(There are some new pictures if you are interested...)
We got some absolutely GREAT news yesterday. Our insurance verbally approved our appeal for more therapy for Molly!!!!!! All of her therapists called me, very excited about the surprising news. I was thrilled beyond words. Something so important for Molly's recovery is hard to give up (or be told you can't have it in-home anymore). I know Dr. Kurtzberg and our case manager had a lot to do with the prompt decision. Wow! Molly has so many people looking out for her, it's overwhelming! This decision will take so much stress off us as we head home. We weren't sure how everything would work out, but now we're set. Thank you for your prayers about this...they worked again!
Yesterday, Molly had her first "real" bath in the tub! It was really quick, as I was trying to hold her lines out of the water, but she was so happy! She splashed, and giggled, and tried to eat the bubbles. What fun! I'm so glad she reacted this way, I thought she'd be scared, but that was not the case. She was a little fishy!
Yesterday, our best buddy, Allison, went grocery shopping for us. She had her niece with her, who is 2, so they couldn't come in for a visit, but Molly absolutely sqealed with delight when I held her at the door. She loves visitors, especially little ones!!!!!! It was so funny. Today, our friend Joan is coming over so I can go out for awhile. It's so nice that we have this extended "family" here to take care of us. I am excited to run errands, and have a bit of time out of the apartment.
Molly is getting very determined to move these days. She actually made it across the floor by rolling, sitting, stretching, turning, then repeating the whole routine again and again. It's nothing consistent like crawling, but hey, it's a start! As long as she can get to whatever she wants, I'm thrilled! She is also very proud of herself. I'm really going to have to watch those lines now!
She has also shown me a few more "signs" for "eat", "more", and something she made up where she taps her head... Hmmm. I'm still working on that one. I hope it doesn't mean she has a headache!!!!
Thanks for checking in with us today. We are doing well, and Molly is very happy. She's actually talking to me right now from her bed... I wish I could understand it, but I think she means "get me out of here, Mom- I'm awake!"
All our love, Jenny and Molly
Thursday, September 06, 2001 at 03:02 PM (CDT)
Day +167
Well... after all that good news on Tuesday, we were bound to have a little excitement, right? This morning, Miss Molly was jumping so enthusiastically in her Johnny Jump-up, that she broke the connection to one of her IV seringes. OOPS! Luckily, I noticed it immediately, and clamped the line to stop the bleeding. Thank goodness I had just placed a clean towel under her feet to jump on! I don't think the line touched anything contaminated. She continued to jump, totally oblivious to the situation. It looked much worse than it felt. I don't think she felt anything! I called the clinic to let them know what had happened, and we had to make a trip in for line cultures and an IV dose of an antibiotic. I was glad they always err on the side of caution. We'll know if any bacteria grows in the next few days. I am optimistic she'll be fine... however, a few extra prayers would be helpful just in case. We don't need another infection, that's for sure!
After our visit to clinic, Molly settled in for a nice afternoon nap. Her in-home therapy visits have been stopped for now... but hopefully our appeal for more visits will be approved. It's too bad, cuz Molly was doing so well with everything. I'm tyring to do my best at giving her opportunities for OT, PT, and Speech, but I'm no professional!
I got our schedule for next week, and surgery is on Thursday. I'll give more information as I learn of it. It'll be a busy week, but it's a GOOD busy.
Thanks for checking in today to see how Molly's doing. She is a champ... line break and all!
We send our love and gratitude to each one of you.
Wednesday, September 05, 2001 at 11:54 AM (CDT)
Day +166
Well, yesterday was quite a good day. Albeit long, we finally saw Dr. Kurtzberg late in the afternoon, and got some information we wanted to hear.
First off, Molly's doing great. She is eating macaroni and cheese like it's going out of style, and drinking about 16 ounces from her bottle. She was moving around her bed at clinic more than ever, and was enthusiastically "performing" for all the onlookers. Her latest craze is her dancing... She bounces up and down whenever she hears music, or someone dances in front of her window. I struggled to get her to take a nap, and finally won the battle, but not for long. Mol was up and at'em in no time, with her new laying to sitting move perfected...I was out of the room chatting with a friend, when I peeked in and found she had inched her little butt backwards, so it was crammed between the two siderails, with one leg hanging off the bed! I cracked up! She was pretty surprised to find herself in this position, but gave me a big laugh when I ran in the room and asked her how she got there.
When Dr. Kurtzberg came in, Molly was not only surrounded by all of her books (her favorite pasttime), but three docs/students who were with Dr. K as well. The visitors were quickly put to work...Molly promptly handed them each a book and grunted for them to begin reading. We all laughed so hard- which made Molly laugh, too. She is such a character! The crowning move, however, was when Molly handed a book to Dr. Kurtzberg, and signed "book"... for the first time. I almost fell over. I've been doing this for weeks now, and she finally got it! And performed it for Dr. Kurtzberg, no less!
Clinically, Molly is doing great. She seems better than ever since the shunt was removed. The plan for the next week is to get a repeat CT scan of her brain, and a repeat ultrasound of her abdomen, to see if there are any changes due to the infection. If all looks ok, then she will have surgery to replace her central lines, with a possible spinal tap while she's under general anesthesia. (We'll pray that she performs an encore to the shunt surgery with no complications in extubation again...)
In addition to this, there are still a number of tests (bloodwork,mostly, some x-rays, some Dr. visits) that will need to be scheduled for her 6-month follow-up... AND, if we can squeeze that all in.... and Molly's still doing well.... we will be going HOME by the end of September. Whew! (I hesitated to put that in writing because I know all too well how things can be delayed, but I'm just so thrilled about the concept, I can't help myself!)
That being said, we now have a whole new realm of "checklists" to conquer... there is so much to do in preparation for Molly's homecoming... with insurance, with doctors,home health care in Chicago,packing the apartment here, etc... but John and I are fueled and ready to close the book on our extended "vacation" in Durham... and bring our little Missy HOME, where she belongs.
Please keep us in your prayers that this plan actually comes to fruition, or even close...(we'd settle for that, too.) just without any "medical" complications...
In closing, I want you to know how much we appreciate your continued support of everything we've been through with Molly. That light at the end of our tunnel is starting to shine a little bit brighter these days, and it is due, in part, to all of your love and prayers for our little girl. God bless you!
Monday, September 03, 2001 at 09:55 AM (CDT)
Day + 163
Happy Labor Day! Molly is enjoying her holiday in true form... She is napping well, eating more, chattering a lot, and moving quite a bit. Things are looking good! I am anxious to get to clinic tomorrow (I never thought I'd say THAT!) so we can talk to Dr. Kurtzberg about moving forward to our departure day.
Grandpa B. left yesterday. He stayed with Molly all day on Saturday, so I could go out. I saw two movies, something I've desperately missed doing in the last 7 months here. It was so much fun- being out, having time to myself, and watching some good flicks! Molly and Grandpa faired quite well back at the apartment, being goofy and playing. I needed that break! Thanks, Grandpa B!
We hope everyone enjoys their vacation day... Thank you all for checking in and thinking about Molly. Your thoughts and prayers are carrying us through.
Friday, August 31, 2001 at 05:32 PM (CDT)
Day + 161
Hello, Molly fans!
Just a quick update to let you know that Molly's spinal tap was cancelled, because she is doing so much better with each day. Her appetite has not increased as of yet, but the IV fluids at night are keeping her labs in check. She is happy and playing lots, and sleeping well, too. She had a great time today with Dru, her speech therapist. They had some pretty funny conversations!
Later today, I got to go out for a few hours, while Molly and Grandpa B. played at the apartment. It was so nice to get out! I did a little shopping and got a manicure. Thank you, Grandpa B! When I came home, there was a huge delivery of food from another family who left Duke to go home today. What a surprise! We are very gracious for their donation to our refridgerator. It is sad to see families whom we've come to know and love leave our life here in Durham, but it is so great when a transplanted child is well enough to go home. (Way to go, Austin!) We'll get there someday. I keep reminding myself that slow and steady wins the race.
Enjoy the weekend, and the holiday! Thank you for all your love and prayers for our family.
Thursday, August 30, 2001 at 04:25 PM (CDT)
Day +160
So sorry, it looks as though my update from yesterday didn't post. Hmmm. My connection got cut just as it was uploading. Anyway, Molly's CT scan came back normal, showing no increased cranial pressure. Good news!
Since I last wrote, Molly has taken in less fluid and food... and she vomitted twice in the last 24 hours. UGH. (I am hoping the nausea was caused by a recent med switch from IV to oral magnesium.) So, today, her electrolyte levels were low... no surprise. She got some IV magnesium and potassium in clinic, and is back on IV fluids, not TPN, at night. This put my mind at ease that she won't get dehydrated. I think she'll bounce back to eating more if she feels good! She was starting to get really weak without the fluids. Her muscles were like "goo" yesterday, and I got worried. However, today Mol perked up, danced for everyone at clinic, visited Dr. Kurtzberg at her office, and had a great PT session.... all without a nap!!! She is tentatively scheduled for a spinal tap tomorrow, but it may be cancelled if she has a night without vomitting and her labs are good in the AM. Keep them bananas comin'!
Isn't it amazing how important these electrolytes are to her body's functioning? I sort of took them for granted before, but now I realize they are very essential to her well-being.
Today, Molly has had 12 oz of juice, and she gobbled some bananas and 3 french fries at clinic. I was pleased. She is on a roll.
Speaking of rolling, today, Molly rolled from her back to her stomach, then pushed up to a sitting position in one fell swoop! I was astounded to see her in such a different position so fast! Yeah, Mol. I gave her big applause for her new move.
Tomorrow, she'll have speech therapy in the morning. I'll be interested to see what the therapist does with her... she is starting to use new sounds, especially when she has a mad cry... I can't even describe it,("teerrnnndeeneeeenrrr"!) but she is definitely trying to say something! Hee hee!
Thank you for your words of support in the guestbook and in emails to me. I really appreciate the following Molly has created. It warms my heart to see all of you checking in on her. God bless you!
Tuesday, August 28, 2001 at 09:30 PM (CDT)
Day +158
Things are going well. Molly has started eating again... little by little. Today, we had our long day in clinic. Among other things, the doctor said he'd like Molly to take in at least 20 oz. of liquids a day. At this point, she's reached her highest level of intake at about 12 oz, so she's got some ground to cover. We just want to avoid dehydration. Otherwise, she is doing great. Everyone is happy with the way she looks, her lab results are all good, and her sweet disposition is showing itself again.
Tomorrow, Molly will have a CT scan of her brain. This will give us an indication of how her brain is handling the fluid pressure post- shunt removal. On Friday, she will have a spinal tap, to allow the doctors to get a pressure reading as well as test the fluid for infection. Since she has been on the antibiotics for a week, they want to see how much of an effect they have had on the bacteria. The pressure reading will also give important information to help them determine whether another shunt is necessary or not.
Grandpa Birmingham came to visit today! In addition to his own charming personality, he brought a stuffed talking frog named Lilly, whom Molly loves. She wears a band-aid on her toe, just like Molly wears every night (her pulse-ox probe is attached around her toe). The two of them had lots of fun playing, talking, and laughing. How nice of Grandpa B. to make the trip for us! We're very glad he's here.
TJ starts school tomorrow (Wed.) I am hopeful I won't have to miss too much of his school year. It really bums me out. John is taking him to the Open House tomorrow. TJ is absolutely thrilled about school, which makes me smile. I know he'll be fine, I just want to be there with him.
Thank you all for checking in on Molly today. We appreciate your prayers and good thoughts for her continued recovery. God bless you!
Sunday, August 26, 2001 at 09:40 PM (CDT)
Day + 156
We had to say goodbye to John and TJ... again. These departures get harder for me each time. I'm getting tired of saying goodbye. Albeit hectic, we did have a nice week together. John, TJ, and I were able to go out for dinner together two of the evenings, while Molly's nurses watched her. We have been so lucky to have such great nurses!
Molly had to go to the BOPP today to get an IV of magnesium. They discontinued her IV fluids, so I had been giving her an oral form of mag 4 times a day. Apparently, it hasn't had a chance to "take" yet, so she needed a boost. Our "visit" should've lasted about an hour, but it took over 3 hours, because the nurse was really busy with all the weekend kids. Ugh.
During her week at the hospital, Molly learned a new trick! She can now push herself up to a sitting position from laying on her stomach! She is most proud of herself, however, this new antic has put a big dent in nap time. She fights laying down for a nap, and laughs once she is sitting. There's not much we can do except laugh with her. She is such a character. I am pleased she has the strength to maneuver herself!
I was getting worried that Molly had a headache related to the shunt, as she has been pretty irritable today. However,I think I found the culprit! I noticed four of Molly's upper teeth coming in at once. Wow... now if she could just start using those chompers to eat!
Speaking of eating, there's not much of it going on. I really hope that her mouth is just too sore, and it is a defense mechanism, but Molly would not eat anything today. She drank some of her bottle, but would not let a morsel in her mouth. I am worried now that she will get dehydrated, so I'm keeping a close eye on her. She continues to lose weight, but not enough that is too worrisome yet.
We are off to clinic tomorrow for a follow-up to our week in the hospital. I look forward to seeing everyone there again. The nurses are always so helpful, but especially last week when I was here alone and Molly was being admitted for surgery, they really came to my aid. They are so sweet to Molly. I am anxious for them to see how well she's doing post-surgery.
Molly is sound asleep in her own crib, satting 95% on room air... Ahhhh. For the moment, a sigh of relief. I continue to thank God for all of the blessings He has bestowed on us, as well as all of the support we've received during this journey. Good night!
Saturday, August 25, 2001 at 06:44 AM (CDT)
Day +155
Things are progressing so well... Molly is feeling better than ever! She is eating, drinking, playing, talking, pulling her brother's hair, waving, dancing, and giggling a ton. She has surpassed anyone's expectations with her incredible resiliance after Tuesday's surgery and her recent infection. So much, in fact, that she is being discharged today! Everyone here seems a little shocked... ourselves included. Hopefully, removing the shunt is exactly what she needed to kick this last leg of her transplant journey.
Thank you very much for all of the extra prayers you've been sending up for Molly this week. We feel them every step of this journey, but are especially touched by their effect on her recent improvements.
P.S. One of TJ's favorite hospital activities is throwing coins in the lobby fountain. Every time he'd toss a coin, he'd wish for "Molly to be able to come home from the hospital. " Who says wishes can't come true?
Thursday, August 23, 2001 at 01:54 PM (CDT)
Day +153
Molly is doing well. Her white blood count dropped from 42 with the onset of the infection to 11.5 today. Much better! She is drinking her bottle and TJ and I brought her some McDonald's fries for a treat... (She loved all three bites she had of them.) The BMT dietician continues to provide us with insights and products for increasing Molly's caloric intake, so that she will not have to go back on TPN.
Neurologically, Molly seems to be doing well, too. She is being herself again, and continues to light up when Mr. TJ comes in the room. The doctors are really pleased with her reaction to the antibiotics, and are already talking about a discharge of early next week.
Thank you, as always, for your loving thoughts to us in the guestbook, and for all of the prayers being said on Molly's behalf. Your support really lifts our spirits.
Wednesday, August 22, 2001 at 09:48 AM (CDT)
Day +152
6PM update:
Molly continues to show us positive signs of improvement. She was very excited to see John and TJ, and immediately reached out for them, picking up books, and playing with toys.
Results from lab showed that the infection is Molly's old enemy, enterococcus, the same bugger that got into her lines in early July. She is on high doses of antibiotics to help fight the remaining infection in her spinal fluid. We're now aware that we are dealing with something a bit more serious than a line infection... meningitis is nothing to fool around with, and we are hopeful the medications will help take hold of the bacteria.
In addition to the infection, we are also carefully observing Molly's neuro capabilities. The doctors will do frequent spinal taps on Molly to gauge her pressure, and determine whether or not another shunt is necessary. Dr. Kurtzberg saw Molly today, and was really pleased with her status. Although "she doesn't have a crystal ball," she felt pretty confident that all of the past probelms Molly has experienced with vomitting, lack of appetite, etc. will subside as a result of yesterday's surgery.
For the next few days, we'll focus on getting those antibiotics into Molly so they can do their job.
Thank you again for checking in on her. Your prayers are working!!!!!
from this AM...
Molly came through surgery well. The shunt was removed without problem, there was minimal bleeding, and Molly was extubated successfully. Although the procedure was relatively short, the recovery time kept us on the 3rd floor for a few hours. I was so glad to see her breathing on her own, but I finally felt safe once we returned to our "home away from home" on 5200! She continues to be on blow-by oxygen, and has experienced a few dips in sats this morning, but overall Molly seems to be doing well. Her nurses are keeping a close eye on her by doing neuro checks every 2 hours, and the docs will continue to monitor her intercranial pressure. So far, the thought is post-transplant, she may be able to handle NOT having a shunt, but the option of placing another one is never too far from anyone's minds.
After that belly tap yesterday, Molly is able to sit up, and had a few sips from her bottle this morning. I hope we can get her eating soon, so she doesn't lose momentum from the last few weeks post-TPN. For now, I am going to spend the rest of the day staring at her sweet little face, and thanking God that we were still here when this all took place. It was a long, scary day yesterday.
John and TJ are on their way here, and will arrive this afternoon! We still plan to spend as much time as possible together... as a family.
Thank you so much for all of your prayers for Molly. We love you!
Tuesday, August 21, 2001 at 10:34 PM (CDT)
Day +151
Just when we thought we were out of the woods...
Molly's journey has taken another turn. I'm not sure if it is for the better or worse, yet, as I am sitting in the surgical waiting room to write this at 11:20PM. Last night, Molly began vomitting in her bed while asleep. She continued to show signs of discomfort throughout the night, so I gave her an anti-nausea IV, which helped. However, it was short-lived, and she kept waking up breathing heavily and fast. Her heartrate was increasing, and by the time the sun rose, she was screeching in pain, and trembling in her bed. I decided at that point, she was not suffering from a tummy ache from all the new foods I had been trying with her. I called Dr. Kurtzberg, who ordered an immediate ultrasound.
The ultrasound showed, to our suprise, a generally healthy gall bladder. However, it also showed a collection of fluid (they call it a cyst) around the base of her shunt. (The VP shunt goes from her head down her back, and empties into her abdomen.) It was determined that both her head and her belly would need to be tapped, in order to see if the shunt was working properly, and if the retained fluid was infected. Poor Mol endured the taps with courage, and spent the rest of the afternoon trying to get comfortable at clinic. She would scream at just a mere touch.
At 4PM, word came back to me that the fluid stained positive for a germ, the actual name of the bacteria to be figured out at a later date. Not good. The shunt needed to be removed as soon as possible, and Molly was put on 3 different antibiotics to cover the infection.
We have been re-admitted to the BMT ward, and are in room 5202. I'm guessing we'll be there about a week, but a lot will depend on the outcome of tonight's surgery. The same surgeon who placed the shunt is removing it. He knows Molly and her history.
Please say a special prayer for our little lady tonight. We were very caught off guard by the day's events, and are working on less than a little sleep. I hope and pray that Molly will come out of the anesthesia alright, but I am a bit worried knowing that her lungs are her weakest point.
I will update more as soon as I know. To say the least, we are fortunate that this was found pretty early, and the infection did not even have a chance to cause a fever. However, it is still very serious, and we will take things one minute at a time. Thank you for your prayers for Molly and our family.
Sunday, August 19, 2001 at 11:09 AM (CDT)
Day +149
Not a whole lot to report from Durham, which I guess is a good thing. Molly and I have had a very lazy weekend together, playing, reading books, napping, and the such. Yesterday, we went for a drive around Durham to pass the time. (It's funny how I long to go grocery shopping, hee hee!)
Mol continues to want to move and talk... She's not giving up on her latest move, which is pushing herself backwards on her back. She bends her knees and pushes off the floor. It's funny to watch! Our conversations have included lots of da, da ,da's, as well as lots of grunts. This is how Molly tells me she wants things. Point and grunt. She sounds more like a baby dinosaur! Her grunt is more like a screechy whine. I imagine she is frustrated and wants to tell me lots of things.
After her speech therapy on Friday, we came up with 10 objects and actions that I'm trying to reiterate with sign language. It's slow going, but I'll keep trying. Molly is working to perfect her version of "all done". She says "a-da" every time I finish securing a new diaper on her, or when she doesn't want any more food. Not bad!
John and TJ are coming to visit on Wednesday. We can't wait! It may be my last visit with TJ for awhile, as he will start school at the end of the month. I am so sad I won't be home to see him on his first day back, but I know he'll have lots of people there to take care of him. I need to soak up all the "TJ" I can get while he's here. He is such good medicine for us! I miss him.
Today, Molly is 16 months old! Maybe we'll have a birthday party for her when TJ is here...
Sending lots of love and gratitude for your care and concern for our family....
Jenny
Thursday, August 16, 2001 at 06:05 PM (CDT)
Day +146
Molly officially rolled over today! We were playing on the bed, and she giggled with delight every time she'd get a new view of the room. I'm sure my cheering and screaming had something to do with her being happy, too. (I was a bit of a maniac about it.) Anyway, it is fun to see her shakin' her tail feathers, and wanting to get places. I am really proud of her.
We went to clinic today, and she lost a few more ounces. This sounds silly, but I can feel the difference when I carry her! Overall, she's lost about 4 pounds. I'm still trying to feed her as often as possible, but she is very moody about it. And when shows me she doesn't want something, there's no getting around her. She is becoming quite feisty!
Our days together are still busy... even though our clinic schedule has been reduced. We're still going in for weight checks and dropping off blood draws in the morning. When a therapist isn't here at the apartment, we're trying new foods, watching videos, reading books and moving around.
This computer has been such a godsend for me. It was a gift given to me by some very dear friends, after we got Molly's diagnosis. I get online and check the guestbook whenever Molly is sleeping. Your words always make me smile. However, today, I had the hugest smile ever. I received a "video" guestbook from almost 20 family members and friends! I was so surprised, and was glued to the tv for over an hour watching, listening, laughing, and crying at all the warm sentiments that are being sent our way. John is totally responsible for pulling off this whole effort, and I am so touched. He knew I needed a bit of home here in Durham, and I got much more than that! I saw new home projects going on, garden displays, TJ's lemonade stand extravaganza, and all the babies (some that have been born while I was here) whom I miss and love so much! All of my favorite things! There were kids dancing, singing, eating birthday cake, swimming, reading books to Molly, and sending her the most darling thoughts ever. I got charming house and apartment tours, updates from friends on new jobs, new babies on the way, new pets, etc. I watched kids playing in the pool and sprinkler, and saw babies crawling, walking, swinging, bouncing, and eating! I even got to meet some special people who've come into my life since I've been away, but I haven't had the opportunity to see in person yet. I have to thank some very creative friends (you know who you are) whose tape was more of a Saturday Night Live skit than just a home video. I was crying so hard from laughter my stomach hurt! What an incredible gift of love and support! I cannot tell you how much it meant to me that so many people would go to such lengths to help us get through this last leg of our journey.
It goes without saying that we are blessed beyond our greatest expectations. I have learned so much through this experience, and the support shown to me by all of you is something I will never forget. I want to thank John for his unbelievable creativity and thoughtfulness. (As if he doesn't have enough going on as a single parent, he found time to put this gift together for us!) Thank you, everyone who tunes in for Molly updates, for your kindness, your love, and your prayers. You are all very special to us, and we love you! God bless you.
Signing off with BIG smiles...and lots of rolling in Durham.
Wednesday, August 15, 2001 at 11:58 AM (CDT)
Day +145
Miss Molly continues to do well these days. Our visit to clinic yesterday showed that she has lost some weight (she's actually back to the original weight she was prior to transplant), but not enough to be worried about. We tried french fries yesterday, as her sodium levels were down, and boy, were they a hit! (like I'd ever imagined they wouldn't be? she is SO like her mommy!) She is also drinking much more from her bottle, and is open to different textures every time I offer her new things.
Dr. K was really happy with Molly yesterday. She agrees that Mol is looking and feeling better than ever! She had not spoken with the surgeon regarding her ultrasound last week, but she mentioned that the report from radiology was very much in Molly's favor. I took this as a good sign that she will not need her gall bladder removed, but can't say for sure. I'll wait to hear a confirmation once the surgeon has seen Molly.
Dr. Kurtzberg and I giggled as we think the few lost ounces was just what she needs to be able to start moving! Molly seems very close to crawling, or at least scooting, which is really exciting! Unfortunately, Molly's therapy visits may only last through the end of the month, but we plan to appeal for more. Dr. Kurtzberg is on board, and agrees that Molly is showing significant improvements with the therapies in place, and does not want her to lose them. We have been very fortunate to have such good coverage, so I really can't complain. We have a wonderful case worker who is a big Molly advocate. We'll figure it out...
There are three other children with Hurler Syndrome at Duke now. In addition to the many children who suffer from Hurlers, I ask that you keep them in your prayers when you pray for Molly, too. Their names are Austin, Kylie, and Andrew, and they are super-sweet. (Also, don't forget our little friend, Susannah, who is still in the hospital in MN.) It is unbelieveable to me that we didn't even know what Hurler Syndrome was less than a year ago, and now we have new friends because of it!
Thank you for your generous heart and prayers. I am overjoyed with everything Molly has shown us, and her progress is a result of your warm thoughts and petitions for her. We love you very much!
Saturday, August 11, 2001 at 03:57 PM (CDT)
Sunday: Molly's doing great. I downloaded some new pics for your viewing pleasure... Hopefully it worked!
Day +142
It seems like the word of the week is "progress". Molly is making such strides, I am overwhelmed! She is eating and drinking more everyday, enough that her weight stabilized at clinic on Friday! She is getting on all fours, rocking, and reaching a ton, too! I am so proud of her!
She had an ultrasound on Friday, and the initial reports are good. Her bile duct has decreased in size (we wanted this to happen), and the sludge is still present, but hasn't increased or turned into stones. So, hopefully, Tuesday's visit with Dr. Kurtzberg will bring about some positive news regarding surgery on Molly's gall bladder.
We had an initial visit from a speech therapist at the apartment this week, too. Her name is Drew, and she was really nice. I am looking forward to her working with Molly to increased her oral motor and language skills. The test she did showed a few months delay in speech, but I expected this. It is something that will be an ongoing battle for Molly, but with her determination, anything's possible! I am proud of her for the babbling she's doing, and I enjoy watching her dance when we sing songs. I know the therapy will be beneficial to fostering her beginning speaking skills.
Kathy Hayes has been visiting this week, and it has been so nice for me! She is absolutely wonderful with Molly, and has quickly rekindled her friendship with her, while helping me out a bunch. She is the one who has gotten Molly to eat so much this week! If you remember, Kathy was here when Molly grew cells for the first time in the hospital, so I am sure she is a good luck charm for us. Molly's ultrasound results proved this, so I am sad that she has to leave tomorrow! (I mentioned this to one of the nurse practitioners at clinic, and he turned to Kath and said, "So what do you do... that is, when you're NOT working miracles?" It gave us a good laugh.) She is awesome!
I hope to continue to report only good news in the upcoming week. I plan to get her those McDonald's french fries and let her go wild!
Miss Mol is doing great! She sends everyone a big kiss and hug for all the praying you are doing on her behalf.
Wednesday, August 08, 2001 at 11:41 AM (CDT)
Day +139
Wow. What a long day we had yesterday... Thank goodness for my friend (and volunteer), Joan, who came to relieve me at clinic for a few hours. I was able to run some errands, mostly to the grocery store, where I bought a bunch of new food for Molly to try. (Little did I know that our visit with Dr. Kurtzberg would send me back with about 20 other new items on a list! Kroger is getting some good business from Miss Molly!) After I ran errands, I returned to a very sleepy little girl at clinic. She has trouble sleeping there with all the attention she gets from everyone, and won't give in until I actually close the curtains and leave the room. So I did, and I was able to catch up with some other moms who had brought their kids back for 6 month visits. It was really nice to see the little girls doing so well, and catch up on their life after Duke. (Yep, most families come BACK to Duke for their 6-month check up... we'll get ours before we go!)
We finally saw Dr. Kurtzberg, as Molly's last infusion was finished, around 7:30. She stayed until 8PM, which was wonderful of her. She is pleased with how well Molly looks, and seems to be certain we will be heading home in the near future. An ultrasound will be scheduled for next week, to do one final check on Molly's gall bladder, and her surgery (for line removal and possible gall bladder removal) will be scheduled for the first week in September. After her recovery, we'll go ahead with her 6-month follow-up tests before we are released from Duke... for a few months.
We spoke a lot about Molly's eating (or lack thereof), and as I said earlier, I will be trying everything under the sun to get this little lady eating. (If I could only give her some of MY appetite... I'd readily do it!) We're looking at salt, salt, and more salt... McDonald's french fries, pickles, chicken broth, you name it! Let's hope something works to spark her taste buds. The chemo can really do a number on them, and salt seems to be the only taste that transplant kids really like. She did have about 10 cheerios today, and actually drank 1 oz of Pedialyte from a bottle last night, so I am impressed. I've been keeping a record of what she's taking in for me and the doctors. It will allow us to see if she's showing an aversion to textures. It will be nice, I hope, to look back and see how far she's come. Dr. Kurtzberg said that if the ultrasound shows a healthy gall bladder, she is going to give Molly a medicine (Megace) that will increase her appetite for awhile.
Other news... they have changed the anti-fungal IV she gets 3 times a week to an oral medication, Diflucan. This means our clinic visits are now reduced to one infusion on Tuesdays! Outside of blood draws and weight checks, our schedule will be much more open for therapists, naps, and time to play at home. I was thrilled. This will really give me a better idea of how life at home will be.
Speaking of home, I am now getting really excited to return to Chicago. Yesterday's clinic visit put a spark under me... I'm ready to go! I know we have a few more hurldles to overcome before we get there, and I'm not homesick, just excited. Thinking of home will help me get through all we need to do before we leave here. The ultrasound of her gall bladder and the eating issues are both very big factors to the length of our stay, but I'm going to think positive on both fronts.
Thank you for thinking of us, and for checking in on Molly's progress. I've loved the nice guestbook entries! Bless you all for your caring love and heartfelt prayers.
Monday, August 06, 2001 at 04:55 PM (CDT)
Day +137
Hi, everyone!
Just a quick update to let you know Molly's doing great today. She is definitely teething... (she's working on #4! Woo hoo!) which is waking her up a few times during the night, but our rocky night has made for a peaceful and nap-filled day. After a quick trip to clinic this morning, (her weight stayed about the same, and her labs were good) she had a great OT session at the apartment. Tom hadn't seen her in over a week, and he was very impressed with the strides she's making. Her strength, coordination, and endurance (the fact that she had been up for 4 hours without a nap, and still smiled and giggled at the end of the hour session) seemed to be improving. All good news! Molly is also eating a bit more... she's up to 16 bites as I write this... I spoke with the bone marrow dietician today about how to boost her caloric intake. Hopefully, Molly will start to enjoy some high calorie/high protein foods, and maintain her weight!
Thanks for checking in today. I continue to thank God for all the angels who are looking out for my little lady, (and me, too!) and I send you all a big hug!!!!
Sunday, August 05, 2001 at 11:46 AM (CDT)
Day +136
We had to say goodbye to our "boys" today... it was so sad. What a great week we had together! Molly really benefitted from the visit. John spent a lot of time working with her, and now she's getting up on all fours much more often, even reaching for the side of her crib! Time to lower the mattress! She actually enjoys standing up against the coffee table, and will reach and turn to play with books or toys, or watch a video. It is very encouraging! (Our PT, Anna, came down with a sinus infection, so she wasn't able to come over.)
TJ was a gem- Molly looks for him every time she wakes up. He would ask to bounce her on the bed whenever possible, because it made Molly giggle. He was also very good about watching her when we had to leave the room for something. I get so much joy from spending time with him... his 4-year-old mentality is so cute, and warms my heart.
When I told him I didn't want him to leave, he said very reassuringly, "Don't worry, Mom, you can call us at home. We don't mind. We have to make sure the house is ok! And YOU get to spend time with your little Missy! That'll be so much fun! AND..... you'll be coming home soon, and then we'll all be together! So don't be sad, ok?" After he said this, I almost fell off the couch. The way he has understood everything and can make ME feel better is beyond me. He is such a blessing.
Speaking of the little Missy, I guess she is eating more, it's hard to tell. 9 bites a day or 10? It's so little, I'm getting frustrated. However, she is getting more teeth, (she has 3 for sure!), so maybe putting anything in her mouth besides a cool teether is just painful. She has only lost about 2 or 3 ounces since being off the TPN, and her labs are looking great! (This surprised me... I thought they'd be really out of whack.) I'll just keep making food and offering her different things til she feels up to eating. Thank you, Amy White, for all the post-TPN tips on eating!
Thank you for checking in today on Molly's progress. As always, we so appreciate your interest in her well-being. We hope you had a nice weekend!
Happy birthday to Molly's Aunt Mary, and a belated birthday wishes to her Uncle Scott and cousin Grace!
P.S. Check out the new pics in the photo gallery!
Thursday, August 02, 2001 at 07:04 PM (CDT)
Day +133
Things are going well here in Durham... Molly has been off TPN at night (IV nutrition) for two nights, and we are drawing blood each morning to test her levels. So far, she hasn't had much increase in her appetite, but I think it's too early still to tell. She is growing very attached to her dad and brother, which is wonderful to see. Molly now reaches out for them, which just melts my heart.
We are still very busy with all that is included in being a "family" again... Things have been non-stop action since TJ hit the scene. I actually remembered how to make dinners, believe it or not! John is really pitching in a ton. I am glad we've had this opportunity to see a glimpse of what life at "home" will be like.
Before I sign off, I want to ask for your prayers for another Duke family. Allison Lamphier, age 3 1/2, passed away this week in Vermont. After going through 2 transplants at Duke, they returned to a hospital closer to home, when her cancer cells returned for the 2nd time. If there is such a thing as an angel on Earth, Allison was just that. We were on the unit when she arrived with her gorgeous brown hair that went down to the middle of her back. She sat in her bed like a tiny little princess, and she made me smile every time I passed her room. She brought a ray of light wherever she was, with her darling Minnie Mouse ears, and her sweet little voice. Even after transplant (and all her hair had gone), she had more energy than any other transplant patient we know, as she zoomed the hospital hallways on her pretty pink tricycle. I learned a lot from her... and her parents, who I admire tremendously for their dedication and love. Even after her cancer had returned for a second time, they never gave up hope for their little girl. They are a wonderful family, who need our prayers especially now, as they prepare for her funeral this Saturday. (I know after mentioning Alison in previous entries, a lot of you went to her website to leave a note of support. Darlene, Ali's mom, left a note in Molly's guestbook letting me know how touched she was by your kindness. Please feel free to visit her site again. It is www.caringbridge.com/al/alisonlamp.)
My heart is so sad for Ali's family, but I know heaven has one more angel to help spread smiles into the world. Thank you for thinking of us... and for all of the kids and families here at Duke. God bless all of you!
Tuesday, July 31, 2001 at 08:44 PM (CDT)
Day +131
"Oh, no! Molly is grabbing at my important papers! Make her stop! They're mine!"
This is just a taste of what we've been hearing this week, and it is music to our ears... Molly is doing great with TJ here. She is moving to grab his "stuff", like a true little sister, and she is babbling up a storm to get his attention. TJ loves her, but is less than impressed with her desire to rip and eat everything she gets her hands on. However, to see him jump around the room and lovingly cheer her on... "C'mon, Missy, you can do it! Don't give up! You can crawl! You can stand! You can do it!" proves his love for his little sister. John and I have laughed so much at the two of them... they are so funny. It has been a joy to watch our children interact like siblings again.
We have been able to spend much time together, but when necessary, we split our time between the kids, so Molly and John can bond, while TJ keeps me on my toes. Today, John went to clinic with Molly for the first half of the day, while TJ and I had a picnic at the pool, chased lizards, and made cookies.
Molly is progressing really nicely.Her labs continue to be stable, she is still breathing room air, and they can't get over how much she is talking and moving in the last 5 days! The only hurdle we still need to overcome is eating. While Molly is eating baby food and cheerios, it is only trace amounts. So, as ironic as it sounds, the doctor decided to discontinue Molly's IV nutrition to see if it has been the culprit in suppressing her appetite. She will start on IV liquids at night, but hopefully, she'll show an increased interest in eating regular food, which will help her caloric intake. They will monitor her levels every day, and she may need to go in for boosts of certain minerals, but we'll see! Hopefully, this will work to her benefit. If not, she'll go back on TPN.
We appreciate you keeping our family in your thoughts this week, and always. Molly is doing so well, we continue to count our blessings, and you are included among them. We feel your support every step of the way.
Love,
Jenny, John, TJ and Molly
Saturday, July 28, 2001 at 12:49 PM (CDT)
Day +128
Hello! We are in Room 10 on the unit today. Molly is asleep for the moment, while she gets her infusion. Not too much to report other than she is still off oxygen and doing well!
The repaired central line, we've found, isn't flushing. They've tried to flush out a possible clot in the line, but that didn't work either, so they think that some of the glue from the splint got stuck in the line. Ugh. Now, they are going to "repair" the repair... and we'll wait 24 hours to see if the new repair flushes. Not a big deal, but a nuisance. I hope this time works!
Molly is really babbling a lot more these days. The nurses on the ward can't get over how much noise she is making... she was so silent the entire time we were here. It makes me happy to see their surprised expressions when Molly talks or screams.
She is also starting to get up on all fours and rock. She has surprised me doing this 3 times in the last 2 days! She is also doing well in her Johnny Jump Up. She is really using her legs to bounce... it's great! I had her laughing so hard last night while she was in it. It made my heart smile. As she bounced, I was attaching her to an IV pump, and she was grabbing at the line. So I said, "Hey, you!" in a funny tone, which sent her giggling up a storm. Before I knew it, I was rambling on and on saying, "hey, hey, hey!" and she would laugh harder each time. It was so much fun! It makes me feel so good when I find something that makes her happy. We are very silly together.
We are counting the hours 'til John and TJ arrive tomorrow! TJ is spending today with his teacher, Mrs. Meyers, but he said after he played with her, he'd come play with me and Molly. (Thank you, Jan, for being so sweet to him!)I told him he was VERY lucky to spend the day with his teacher. When I asked him what they were doing together, he replied, "Oh, Mom, she has all this cool stuff to play with!" I think he believes she lives in her classroom with all the toys, etc. It made me laugh.
Thanks for checking in with us. Being back up on the ward always reminds me how very blessed we are to have so many people praying for Molly. She is doing so well! Please keep all of the other families on the BMT ward in your thoughts, too. They are all struggling through so many different hurdles, and they need our support. Have a great weekend! We love you.
P.S. Thank you to the Birminghams for having TJ stay with you this past week while John was in NY. He loves being with you, and we really appreciate it!
Friday, July 27, 2001 at 08:44 AM (CDT)
Day +127
Hi, everyone!
Thanks for checking in with us today. Things are going really well! Mom and Dad left on Thursday morning. They were such a great help! They took such good care of me, which I so appreciate, and Molly enjoyed watching Pop Pop play the drums on his tummy...hee hee!Thank you, Grandma and Pop Pop! We miss you!
This week, I found that one of Molly's central lines had a hole in it. So, yesterday at clinic, her line got repaired and she had an IV antibiotic and line culture just to check that the hole didn't allow for infection. Molly was really patient while they were doing the procedure... It didn't hurt her at all, but she had to lay still on her back for awhile, which isn't her favorite. We're going back to clinic today to get the splint removed. (The tubing of her line is taped to a splint until the repair is stable.)
Tom, Molly's occupational therapist, is coming to the apartment this morning as well. Molly is really showing strides in her fine motor development and efforts with eating. I am so proud of her! She is eating little bits on occasion, and not throwing up nearly as much (maybe once a day now, if that!) Tom has a new toy that he brings with him for each session, and Molly has quickly figured out he's lots of fun!
Oh yeah, the biggest news of all! Molly has been off oxygen for 2 days straight! Yeah, Mol! Those lungs are getting stronger!
As always, we thank you so much for the way you think of and pray for Molly. Your entries in the guestbook and emails just make my day. I continue to be amazed by your dedication and support of all the ups and downs we've been through. We love you all, so much, and we thank God for YOUR love everyday!
P.S. I need to say a special hello to my new nephew, Robbie. I miss you, sweet peach, and I can't wait to hold you in my arms. I want to kiss that little forehead of yours and rock you to sleep. I know you are being a good baby for your mom and dad, and keeping silly Michael and Katie in line as well. Don't grow up too much before I get home. I love you so much! Molly promises to be your greatest friend!
Tuesday, July 24, 2001 at 10:01 PM (CDT)
Day +124
Hello, all!
Well, today brought lots of news on the Molly front... In a nutshell, she is doing really well, but she will not have surgery on Thursday. I was surprised when I heard, too. However, John and I really appreciate the surgeon and Dr. Kurtzberg taking Molly's respiratory status into consideration before jumping into a surgery which requires general anesthesia. Molly's lungs were my one concern heading into a surgery with anesthesia, so postponing the line removal was music to my ears. She will remain on an antibiotic to continue to fight off any infection that may be lingering in her central lines, and her gall bladder will be ultrasounded again in two weeks. After the doctors have reviewed her third ultrasound, they will determine once and for all (we hope) whether or not it will need to be removed. If it stays the same or worsens at all, my guess is that it will come out. But we'll have to wait and see. Dr. Kurtzberg assumed the line surgery (+/- the gallbladder) would happen in early September.
In the meantime, we'll have a week as a family, not worrying about Molly recovering from surgery or spending nights in the hospital! I am so thrilled! She is doing great... her labs look good, her counts continue to be stable, and she is really working to get off oxygen completely. (In other words, she is not afraid to scream... just ask gramma!) I added new pictures for you to see the progress she's making (especially in the area of hair growth, hee hee!)
Thank you all for reading up on her progress, and checking in each day.
Speaking of checking in...
I'm sure I'm probably the last person to figure this out, but just in case,I wanted to mention the recent virus information I obtained today. After receiving emails from 2 people who have signed Molly's guestbook, I realized it was a virus when they both said something to the effect of " please advise." If you receive anything like this, delete the files.
However, with the help of a good friend, (Thanks, Woodo!) I found the following web address, which has a downloadable removal tool for the sircvirus.
It is: http://www.sarc.com/avcenter/FixSirc.com
If you think you may have opened an infected file, go to this website and download the tool. It worked for me!
Please don't let this unfortunate happening stop you from signing Molly's guestbook. I am sure the virus will get under control... I love reading your notes, and look forward to them everyday! We send our love and thanks, as always...
Monday, July 23, 2001 at 07:04 PM (CDT)
Day +123
Hi, everyone!
Well, it hasn't taken Mom and Dad too long to get involved in Molly's care. I am so grateful for their help! All of us were preparing syringes last night... even Molly! (She likes to crinkle the wrappers.)
Although perhaps a bit overwhelmed at first, both gramma and pop pop have settled into Molly's needs, and are keeping her quite entertained, too. It's nice to have my parents here.
Today, we got some great news on one of Molly's 100-day tests. Her enzyme level has more than doubled: it is at 22.4!!!!! This is extremely exciting to hear. (Her 30-day post transplant test level was 10.4) Now, we just have to pray that the enzyme gets to her brain and really starts working. It can take up to a year to be effective, but knowing the level is there is quite encouraging.
Molly had OT and PT today at the apartment. She is really making strides in bearing weight and manipulating things. However, she is learning how to "work" our emotions, and poor Anna got a run for her money today trying out a new walker. Molly cried so hard her eyes almost swelled shut. It was difficult for all of us to hear, but as soon as she got into my arms, she was fine. Hmmmm.... sneaky little baby. I love that she needs hugs from me, but I don't want to interrupt her therapy sessions. It's hard to time her naps around sessions, and that could've had an impact on her mood as well.
Tomorrow is our long day at clinic. I hope to hear more info about Molly's gall bladder and the surgery on Thursday. Thank you for all of your prayers, and your continued interest in Molly. We really appreciate everything you do for us!
Saturday, July 21, 2001 at 12:01 PM (CDT)
Day +121
Hello, from the BMT ward again! We are camped out here for awhile as Molly is getting her Saturday infusion. She is bouncing in the bed,putting everything in her mouth, and trying her best to get those teeth through her gums! She is in such a good mood... dancing, and smiling at everyone here. I am so pleased with her progress. She really feels good, I can tell.
We are so sad that Nancy and TJ had to leave yesterday. I cried all the way to the hospital. It was really difficult for me to say goodbye this time... For some reason, it's easier when it's him leaving me, not me leaving him as it was yesterday. He kept saying, "Don't leave me, mom! Just one more hug!" UGH! Break my heart. He made everything right while he was here. The apartment seems so quiet without him. I can't wait for him to come back, and neither can Molly! John is bringing him down for a week next Sunday. I cannot wait to be a family again!!!!
Molly had the ultrasound yesterday, but we don't have too many details on it other than her gallbladder looked the same as the last time. Dr. Kurtzberg and the surgeon will discuss the "sludge" in her gall bladder, and decide whether or not she needs to have it removed on Thursday. I will know more on Tuesday.
Today is a gorgeous day in Durham! Molly kicked her toes in the stroller on our quick walk from the parking garage to the hospital this morning. She is trying to move so much more, it is very encouraging! She continues to try food, and is chatting all the time! Hopefully, the surgery this week won't set her back too much. I really feel like she's on a roll in the right direction!
My parents are coming tomorrow for a few days. We haven't seen my dad since February! I am looking forward to them spending time with us, and seeing Molly make them smile.
Thank you for your prayers. Molly is doing so well, and is very blessed by your love and concern. I will try to update again prior to her surgery on Thursday.
Wednesday, July 18, 2001 at 11:04 PM (CDT)
Day +118
I'm sorry for the lack in updates, but the saying IS true ..."No news IS good news!" Since my last update, Molly has outdone herself one day after the next.
It would be an understatement to tell you that TJ is the very best medicine for Molly. He can make her laugh harder than anyone, and she looks for him from the moment she awakes. She'll point to the bed, so TJ will bounce her around on it. The smiles and vocal sounds he elicits from her are hysterical! When he enters the room, she screams, and starts dancing! She absolutely adores him... and she has surpassed my expectations in every possible way since he's been here.
She is eating more and more every day, bringing the spoon and sippy cup to her mouth , she is going to town in her johnny jump-up (while TJ does somersaults or jumping jacks in front of her, of course). She is reaching to stand at a table, holding onto the table with one hand, while the other grabs at something nearby, and today during PT, she even moved her legs to begin taking steps with Anna's help! Yeah, Molly! I almost cried I was so happy.
She has officially cut her second tooth (HOORAY!), and is diligently working on some more...who knows, but it seems like lots are coming in! (I say that every time, I know.) With the teething going on, she's bringing toys to her mouth, and making lots of sounds with them. The other night, after everyone had gone to bed, she woke up crying, so I gave her a teether, and she talked to herself with it for over 30 minutes! I went to sleep with the hugest grin on my face.
Nancy has been beyond a help. I am really proud of her! Tonight, she stayed home with both kids so I could go out and get a much-needed back massage. (Thank you, Katie Cusack, for the gift certificate! It was superb!) She's handled Molly alone at clinic for me, and has even learned how to work IV pumps at home, so TJ and I can spend time together. She has dinner made every night, and has me organized for the next day before I can even think of it! I am so lucky to have her here.
Speaking of TJ... To put it lightly, he makes my heart sing. I can't get over how well he has handled this entire situation... he absolutely amazes me. We've gone to the pool everyday, we found the Durham library to get out books, put on puppet shows, played on the computer, done puzzles, you name it. He is one busy child. And he is growing up so much, I can hardly believe it. He is eager to help with Molly, and is pretty understanding of when I need to tend to her without him. He is so loving. While he was doing something in the bedroom and heard Molly cry in the living room, he said, "Oh, I've got to hurry. My sister needs me to cheer her up." That is his job... and he does it well!
Enough said. We have had an incredible week! After a clinic visit tomorrow, Molly is scheduled to have another ultrasound of her gall bladder on Friday. I will update more after I hear the verdict on surgery. As always, thank you for your continued prayers for her.
Saturday, July 14, 2001 at 11:15 AM (CDT)
Day + 114
Hi everyone! I am writing to you from Room 1 in the BMT ward. Molly is getting a 3 hour infusion, so I brought my computer along to pass the time while she sleeps. Due to her past issues with RSV, Molly gets her own room instead of going into the BOPP room, how nice! With our new schedule, we will have to come in for this infusion every Saturday. It's nice to be able to check in with all the nurses and other parents here.
I cannot believe the transformation this little lady has undergone in the last week! I am so pleased with her! She obviously feels better, but she is really moving and shakin' on all other fronts! She is continuing to eat, picking up cheerios, and moving herself to get toys, etc. She stood at a table last night for the longest she's ever been able to! She had a duo PT/OT session yesterday afternoon, and did really well. She loves her new ladybug seat, and is so proud of her bouncing ablilities. She truly is a new person. She is talking a little more, playing with her toys, and showing interest in things around her, and she is beginning to be ok with me leaving the room. (Thank goodness!) We are having fun together, just the two of us. Yesterday, she even giggled when I tickled her! (Normally, she would cry.)
On Monday, Aunt Nancy and TJ are coming down for the whole week! I am so excited! I told TJ about it on the phone this morning, and he replied, "Well, you better call Aunt Nancy and tell HER!" When I told him I had to get off the phone, (the nurse had come in the room to give Molly some meds), he said, "Wait, Mom, one more thing... give Molly a big hug and a big kiss for me, and tell her that her big brother will be there soon!" He melts my heart. I know his visit will be good for all of us!
Thank you all for checking in this weekend. I continue to tell Molly how many people are looking after her with their good thoughts and prayers. She is a very lucky little girl. Thanks for sticking with us through thick and thin! We love you.
Enjoy the weekend!
Thursday, July 12, 2001 at 05:20 PM (CDT)
Day +112
Hi, everyone!
Wow. Thank you all for your incredible notes and emails. I needed those words of encouragement...especially yesterday.
Molly must've read the website, because once again, she decided to prove me wrong! She had awesome PT and OT sessions, began reaching and bearing weight on her own, and spit out a few da da's for me before the day was over.
She hit a rough patch last night that got me a little on edge. She de-satted a few times (oxygen saturations below 90%, causing an alarm to sound) while sleeping, and wouldn't stop crying unless I held her. She was really congested, too. However,after she vomitted, things seemed to clear up, and she was much better this morning. I kindly requested a respiratory/viral battery today when we got to clinic to ease my mind. Preliminary results are negative for RSV, thank God.
Allison came for a visit to clinic today so I could run a few errands. One of my purchases was a ladybug walker/exersaucer for Molly. At almost 31 lbs, she's over the weight limit, but once I squeezed her legs in there, she was pretty happy! Dr. Kurtzberg and Anna think this may encourage her to bear more weight on her legs... I hope so! So far, so good!
Even better news... Molly decided to eat today! After 4 tries throughout the morning, she drank 2 ounces of Pedialyte, a few cheerios, some bananas, and a little bit of bread this evening! The steroid increase, I'm sure, has something to do with it, but I was jumping and screaming with every bite she took.
Our clinic schedule looks like it has changed for the positive, too. We only have to go in on Tuesdays, Thursdays, and Saturdays, if Molly is doing well. I know those extra days off will be good for us. Given how yesterday went, I know some time away from the hospital fits Molly just fine! (not to mention the effect it has on her mom!)
As always, your prayers mean the world to me... and I feel them working! It is such a comfort knowing how many people are thinking about Molly, and hoping for the best for her, as I am. I will plan on this positive trend continuing...
Sending much love to you all!
Wednesday, July 11, 2001 at 10:43 AM (CDT)
Day +111
Hello, all!
Well, we've had quite a busy week so far. John left early Monday morning, and we were back to clinic. All the nurses and staff were so excited to see Molly again, and were so concerned when she wasn't there last week. It is so nice to have so many people who care about her!
We were at clinic yesterday for almost 10 hours. Our good friend and volunteer, Joan, came to visit and give me a few hours to take a nap at the apartment. Thank you, Joan!
Dr. Kurtzberg gave us the day off today! The smile almost jumped off my face when she told me that. I think she sensed we needed a break. For her to give us a day away from clinic must mean that she thinks things are under control.
On the Molly front... she is doing well, but she seems to be having a rougher time getting back to where she was prior to her hospital visit. She has not eaten anything since before we went in. She refuses everything. At the same time, she continues to be nauseous and her diapers are not a pretty sight. It's getting hard for me to keep pouring these meds into her, knowing that's all that's in her tummy. I would be sick, too! She is a trooper about taking the oral meds, thank goodness, and with the infection, we've added 3 new IV meds as well. Her steroid dose was increased yesterday in hopes that her appetite will follow suit. I hope so!
In addition, a week of feeling yucky and sitting in a hospital bed really tightened up her muscles. Where she was bearing weight, turning, and reaching prior to the infection, she is now content sitting in her Budha position, and not moving at all. Our awesome PT, Anna, also noticed the slight regression, as Molly screamed and cried at the slightest movement during her session on Monday. Anna will be back this afternoon, so I'm hoping for Molly to "loosen up" and enjoy it a little more.
Molly's new speech therapist, Stacey, came to visit us at clinic yesterday. I mentioned my concerns that Molly was babbling much more two weeks ago, and she said that after being through a traumatic situation, it is almost a defense mechanism for her not to use their mouth at all. She also pointed out that as Molly works harder to breathe, speaking will not come as easily. Although this makes perfect sense to me, I am a little disheartened by the news. I miss Mol's Da da da's! I am working on the sign language with her to help her communicate, in addition to reading lots of books and singing nursery rhymes to her.
Speaking of breathing, Molly is back on oxygen to help her with her sats. She was doing so great in the hospital, breathing room air for 4 days straight, but once we got home, she could not maintain that status. She has some congestion in her nose and upper airways, so we're giving her Sudafed. Hopefully, this will help. (Of course, you know what I'm thinking. I won't even mention those three letters. It makes me shudder to think about it.) Even though we have 2 hepa filters at the apartment, part of me believes that there is something here (mold, mildew?) that caused her congestion and respiratory regression.
I'm having a harder time dealing with Molly's current status. I saw her improve so much after transplant, and it seems like one week in the hospital sent her back to square one! She IS happy, and so much better health-wise than before, I just hope that these other things will improve- quickly! I just have to be patient. Dr. Kurtzberg said that as she gets older, hospital stays will definitely have more of a psychological effect on her.
Molly proved this to be true. The week in the hospital, although it gave her rest and cured the infection, has had a real effect on her in other ways.
Thank you for keeping Miss Molly and our family in your prayers. Please pray that she will regain the strength she needs for her continuing development, and start eating, talking, and moving again!
I look forward to updating improvements next time!
P.S. Happy belated birthday to Molly's godmother, Aunt Julie! We love you!
Sunday, July 08, 2001 at 05:19 PM (CDT)
Day +108
This little Missy went to the hospital,
Now this little Missy is home...
We thought she was gonna get lots of teeth,
but this little Missy has none!
This little Missy's feeling much better,
her antibiotics have kicked in great...
Now it's back to clinic visits and additional meds,
to maintain little Missy's healthy state!
Bear with me as I am overjoyed to have Molly back at the apartment and feeling so good. She danced and laughed in her stroller from the moment we stepped off the ward! Thank you all for your continued prayers and good thoughts for her, and all the wonderful doctors and nurses who helped her overcome this hurdle.
We love you very much!
P.S. I wrote Alison's website address incorrectly yesterday. It is www.caringbridge.com/al/alisonlamp.
Please keep her in your prayers!
Saturday, July 07, 2001 at 09:56 AM (CDT)
Day +107
Just checking in quickly to let everyone know how much we appreciate your prayers for Molly. She is doing soooo much better, the fevers have ceased, and with the exception of her newfound "attitude" about not digging the hospital much, she is back to her sweet little self.
Allison, Molly's best buddy, came over last night so John and I could go out for dinner. It was so nice to be together again, thanks Allison!
It has been so nice to see all of our favorite nurses and staff again. It is amazing how much they continue to do for Molly, and how loved she is up here. It warms my heart.
The docs are talking about a discharge tomorrow, Sunday. John will stay overnight and return to Chicago on Monday.
Hope everyone is having a good weekend! We send you all our love!
P.S. Please keep Alison and her family in your prayers, too. (I mentioned her awhile back. She is a 3 yr. old here on the unit.) Her leukemia has relapsed after her second transplant. She will be going home soon, and her family needs all the prayers and support they can get right now. Her website is www.caringbridge.com/alison/alisonlamp.
Thank you!
Thursday, July 05, 2001 at 05:15 PM (CDT)
Day +104
Hello, all...
Things are starting to look up a little here. Molly is perking up slowly, but still resting a bunch from her infection. The antibiotics are starting to show their effects, and she has only had one fever in the last 24 hours. We are pleased with this step in the right direction, and are hopeful that the rest of the week goes as smoothly.
Dr. Kurtzberg came in for a visit today, and was happy with how Molly looked. Her labs look good on paper, and Molly is showing definite signs of improvement. She spoke to the fact that Molly will need to have the infected central line removed surgically after she is stabilized and healthy again. During that procedure, her gall bladder may be removed as well, but we will re-address that in the next few weeks. Given this scenario, recovery time,etc. would most likely bump our trip home to Chicago in September.
We are hoping this weekend goes smoothly and without fevers, so we can head back to the apartment by Monday. She still needs to regain her strength after this difficult week, so we thank you for keeping Molly (and us) in your prayers.
Wednesday, July 04, 2001 at 04:16 PM (CDT)
Day 103
Happy 4th of July from Jenny, John and Molly
John is writing this entry while Jenny is comforting Molly.
Our 4th has been filled with a lot of ups and downs. Molly did pretty well during the night. Her fever was on and off and settled in at the normal range for most of this morning. The doctors gave us an update with some good news and then some 'other' news. The good news is that they have found the best antibiotic match to fight the infection that Molly is dealing with. The 'other' bit of news was that the doctors are a little suspicious of how long Molly's fever had been hanging around...usually see more of a halt after 48 hrs of the initial dosage of anibiotics -which began when Jenny and Molly arrived Sunday night. That said, they planning are to watch her fever curve for the next 24 hours to see if the fever and infection can be more fully wiped out with the antibiotics. If not, we will start talking over the other possible sources that might be contributing to Molly's fever...this will likely involve some more tests and possibly even a procedure to remove a potential problem/causal area (gallblader, infected central line) if that is the consensus.
Needless to say, we are really hoping that the antibiotics will do the job over the next 24 hours. In the area of adding insult to injury, Molly's worst pain of the day has come from new teeth trying to break through. She has charmed us this afternoon with about 3 hours of nonstop crying (for those who have met Molly, you know it takes a lot to rattle her cage).
I will not try and sugarcoat our mindset, mood and nerves right now...frayed at the edges might be a way of describing it best. While we continue to remain positive and optimistic, the length of this journey, the unknowns at this point and Molly's unhappy disposition/discomfort from the fevers and teething are really testing us.
Please continue to keep Molly in your prayers. As always, we so much appreciate everyone's support and encouragement.
Monday, July 02, 2001 at 10:11 PM (CDT)
Day +100, continued...
Hi, everyone...
Well, Molly's day 100 took a turn for the worse after I wrote the first update, so here goes with the second half of her "big day"...
Molly spiked a high fever with an elevated heartrate around 8PM, which lasted until about 11PM. I gave her some Tylenol, which was ineffective, and called Dr. Kurtzberg to let her know the situation. By 10:30, she called me at the apartment to check on us, and when I told her what was going on with Molly, she suggested we come in to the BOPP room to get her checked out. Fortunately, there was a room open instead, so we were admitted to the BMT ward just before midnight.
After her lines were cultured, her fever finally subsided with Ibuprofen, and they immediately put her on an array of antibiotics, to help fight any possible infection. She was pretty spent- her poor heart had been working so hard, and she was really nauseous, too. However, she did sleep ok through the night. Each time her heartrate would elevate, an alarm would go off, and I'd take her temperature and worry some more. Ugh.
In the morning, preliminary results showed no infections in her lines. This was a bit unnerving, because she continued with temps up to 103 by the afternoon. Dr. Kurtzberg ordered an ultrasound of her gall bladder, thinking it might be infected. After careful observation and a consult from the pediatric surgeon, gall bladder surgery was temporarily removed from the list of possibilities. As they continued to work on what was causing the fevers, the docs ordered a CT of her head and belly, (thinking either end of her shunt could be causing the infection). This will be done tomorrow, Tuesday.
The day went on, and the worrying continued. Not knowing what was causing the fevers was difficult to deal with, but Molly began to improve for a short time. Finally, word came back from the lab that one of her lines WAS growing a bacteria. I just about jumped across the bed and hugged the doctor when she told me. Not that it is good news, but it is something that is fairly common and it can be treated with antibiotics.
Whew! What a day this has been.
Fise has been an unbelievable friend through this ordeal. She was due to leave Durham this morning, and in light of the situation, delayed her departure to Wednesday. She was so wonderful to have here while we were dealing with the scariness of it all. She and Molly managed to get me laughing quite a few times today, which is what I needed...I am so lucky to have her!
John is arriving early tomorrow morning to stay through the weekend.
As I write this, Molly is battling another fever. She is a little sweet pea in a big bed this time around... working so hard to get this infection under control. Tomorrow's tests and lab results may bring new ideas to light as well, so we're not finished learning yet. I'm banking on at least a few days stay at the "get well hotel".
Needless to say, even at day +101, Molly still needs your support and prayers. We are so grateful for all of your love, and your enthusiasm for her well-being. Thank you, one and all, and good night, from Room 5205.
Sunday, July 01, 2001 at 11:01 AM (CDT)
Day +100
We made it! 100 days... Molly's white blood count is at 27.9. She is doing great!
Clinically,Molly is improving daily as well. She continues to be on oxygen all the time, and is vomitting every 2-3 hours during the night, but all signs say she is doing better. Her sats are good, she hasn't had a fever in a few days, and she is holding down a bit of food during the day. She is back to her happy self, which is a welcome change. She really gets into her "da da da's", and seems to be saying "all done" after she throws up. She pushes the basin away and says, "a-da"...every time! It is funny. She even bounced a bit in the johnny jump-up for us yesterday!
While Jill was here, she sang a song to Molly about 3 ducks.... Part of the song has a duck saying,"quack, quack, quack"... and yesterday, Molly was repeating the sound in the same exact way.Fise asked,"what's all the honking about?" and I picked up on Molly's love for this song... She was doing her best to let us know she wanted to hear it, so of course, we obliged.
Dr. Kurtzberg has given us the entire weekend off from visiting the BOPP room. I think she realized after our long week last week that we really needed the break. With Molly improving, she felt confident that she'd be better off not travelling on oxygen and waiting for too long up on the ward if there wasn't any big problem. It has been sooooo nice!
We've had such a nice visit with Fise! Molly has won her heart, and Fise is a big help to me! She has picked up on all the details from her crash course in nursing, and is taking good care of me, too. Molly's tongue clicks (she thinks she is talking)send Fise into hysterics... it is so silly to watch them have a conversation by clucking to each other. Fise's new name for our little clucker is "Hot Ta-Molly", hee hee!
Thank you again for all of your prayers for Miss Molly. I can't believe we've made it to 100 days already. I am so grateful to have her here with me! She is growing, learning, and building up a strong immune system. It is truly a miracle. We love you all and thank you for your continued interest in her well-being. Obviously, we aren't headed home today, or anytime real soon, but as long as Molly continues to improve, we'll get back to Chicago soon enough. We love you all!
P.S. Happy Birthday to Grampa B. today! Also, Happy Anniversary to Uncle Bob and Aunt Caryn, and friends Allison and Dave Coho!
Thursday, June 28, 2001 at 08:45 PM (CDT)
Day +97
Hello, all...
Things are looking up again. Thank you for all of your prayers. Molly's status is improving with each day. She remains on oxygen all the time, but we are lowering the amount slowly, and she is able to maintain her oxygen saturations despite the reduction. After changing some of her meds, we have gone back to the way they were before, in hopes that this will help the vomitting issue that has accompanied the sinus infection. She is taking Pedialyte from a bottle and loving it, but food is slow to make it's way down and stay there. Baby steps...
Molly is loving her new friend (and my old friend) Jill, who has very kindly stayed for two extra nights to ensure that we are both okay. Amazing... Everyone at clinic has commented on how wonderful she is to us, and I am so grateful she's been here for me, especially this week. Aunt Mimi (Fise) is arriving tomorrow, just in time for a quick reunion for the three of us! I continue to count the blessings I have gained from this experience. The chance for the three of us to be together again was almost unimaginable, so I am very happy!
Tomorrow, Molly will continue her array of 100-day tests with an echocardiogram of her heart in the morning. Next week's schedule includes a neurological appointment and lots of lab work (blood draws). I'll keep you posted on the reports as I learn them.
Thank you for being here for me- your prayers have helped us over another bump... I hope Molly will be back to bouncing in the johnny jump-up by this weekend!
Sending lots of love!
Tuesday, June 26, 2001 at 08:48 PM (CDT)
Day +95
Hello to all ... this is Jill checking in on behalf of Jenny and Molly with an update of the last 36-40 hours ... Early Monday morning Molly spiked fever, and her respiratory status continued to decline. Molly and Jenny headed off to the clinic later in the morning and went through a variety of tests. She had a chest x-ray, respiratory viral battery, blood cultures, stool cultures, venus blood gas labs, and was put on an antibiotic.
When I arrived early in the afternoon, I was greeted by some of the incredible staff at the hospital. All of whom not only know Molly and Jenny (John and TJ), but clearly love them very much! Molly was pretty unresponsive and clearly not feeling herself. The doctors were unable to pinpoint a reason for her spiking a fever and just not feeling well.We were sent home for the evening with instructions to call 911 if she turned blue or was showing any signs of respiratory distress . As she was on oxygen the entire night, her sats remained ok but her heartrate increased and she spiked a fever at 4am, which put us back in clinic today for almost 10 hours! Molly received more blood cultures and a CT scan of her sinuses, brain and lungs. After a couple of long naps and some Tylenol, sweet Molly was starting to respond to all the attention that she received from her nurses and visitors. By this afternoon she found a couple smiles, played "So Big" and was waving. She even had a couple of cheerios and some Pedialyte.
Finally by the end of the day Dr. Kurtzberg was able to confirm that Mis Mol has a sinus infection, and hopefully the anitibiotics she is already on will help fight the infection. If not, they will put her on another antibiotic. Toward the end of the day she received a blood transfusion which we hope will improve her respiratory status. She is sleeping soundly now, but needs your continued prayers for a quick and uncomplicated recovery.
And please make sure to keep Jenny, John and TJ in your thoughts and prayers as well. I am endlessly amazed at their strength. I think that Jenny was modest in her answers to what it is like for her on a given day.
Good night.
Sunday, June 24, 2001 at 03:33 PM (CDT)
Day +93
Hope everyone had a nice weekend. Molly and I had to say goodbye to Aunt Caryn today. We are so grateful for her visiting. She was an amazing helper!
Molly's doing well. Her respiratory status seems to be changing, however. She has needed some oxygen the past 2 days as her sats are dropping slightly, and she is vomitting again like she did in the hospital (after respiratory treatments). I spoke with Dr. Kurtzberg today, and she was not alarmed, but will see her again on Tuesday. I am glad we have oxygen here in the apartment. It gives me such peace of mind to know she is breathing and satting alright once she is on just a touch of it.
We reacquainted Molly with her Johnny jump-up this weekend, and she loves it! I was so pleased to see her react with a smile and a giggle, as only a week ago, it made her cry. This is proof that she is getting stronger! She now hangs from the door jam and jumps for quite awhile. It is really fun to watch her. I plan to get a full-length mirror for her to check herself out while she jumps! I bet she'll be impressed!
Thank you for praying for us, and for thinking of Molly. In chatting about this whole experience with Caryn over the weekend, I was reminded again just how many people have her on their minds. Your prayers are like a warm blanket embracing me, especially when I am here alone with Molly. You have no idea how much you have helped carry us through this journey. Your prayers are working. Thank you very much.
Saturday, June 23, 2001 at 08:53 AM (CDT)
Day +92
Hello, all!
We are breathing a breath of relief here, as Aunt Caryn arrived on Thursday. Not only is she an expert in listening, laughing, and being a friend, but she is also a pediatric nurse! Talk about having an angel decend upon you. She has brought me so much peace of mind...and strength beyond measure. I am so glad she is here with us! (To Bob and the girls: sorry, I don't think I'm going to let her go home.You can do without a wife and mother for a few months, right? Hee hee!)
We went to the clinic yesterday, and they gave us the weekend off! No lab draws or BOPP visits unless necessary. Whew! Molly is doing well... just starting to cough a little, which has me scratching my head. I hope it's nothing, but... we'll just keep up those respiratory treatments and hope for the best!
Today is a very special day for Molly's Aunt Mary. She is marrying Ben in Chicago this afternoon. TJ is making his debut as the ringbearer, and John is an usher. I am sad that I can't be there with everyone. Please mention a special prayer for Mary on this very important day in her life.
It is also Grandma B's birthday! Happy birthday, Gramma! We love you and are sending you huge hugs... enjoy your day as mother-of-the-bride and the birthday girl!
Thank you for checking in with us today. Your words in the guestbook have been so encouraging. We are chugging along toward that 100-day mark... and counting our blessings every step of the way. Thank you for your continued prayers and thoughts for Molly. Enjoy the weekend!
Wednesday, June 20, 2001 at 5:28PM (CDT)
Day +88
Hello, all! Thank you for checking in on us. Today was a good day! Molly and I went to clinic for awhile, then the occupational therapist came over. Molly really likes her because she works on eating skills! Our little Moo Moo is trying to get as much as she can in her mouth, but most of it ends up on her shirt. Oh well. She is showing lots of improvement, and that is what matters.
Some of you have asked what my days are like, so if you bear with me, I'll give you a quick rundown. Our mornings generally start with Molly's 2 IV's beeping around 7 AM. For those of you who know me well, being a morning person has never been one of my strong suits, so I drag myself out of bed to get to those beeps. After disconnecting her from the IVs, I draw her daily blood samples, bag them up, and drive them to the lab near the hospital. (This is where all my visitors have helped tremendously!) Molly then gets two infusions in the morning. I am either hooking her up to an IV or pushing the medicine through her central line. She also gets four meds orally. I have to apply lotion to her body three times a day to avoid any graft vs. host of the skin, and she needs to have her mouth swabbed with a mouthwash 3 times a day to avoid any bacteria. Oh yeah, she also gets two different inhalant treatments 4 times a day, one of which occurs in the morning. So, after IVs, blood, medicine,lotion, mouthcare, and respiratory treatments, getting a new diaper, and an outfit for the day, Molly is now ready for a nap, and I haven't even had a cup of coffee yet! Whew! She usually sleeps while I shower and get that much-needed coffee.
We have to go to clinic for additional IV infusions every day except Thursday. Getting us out the door is a riot- not only do I need to pack the medicines she'll need while we're there, but I bring extra clothes, toys, and videos for her to play with, as well as stuff to keep me busy while she naps. I have the stroller packed to the gills by the time we get to the clinic! Thank goodness there is parking just outside the door. I don't have too far to go, and that helps a lot. Molly needs to wear a hat and a mask whenever we leave the apartment. She pulls it off her face as soon as she gets a chance, but we're working on that...
Our clinic visits vary in length, depending on the IV medicine Molly needs to receive. We usually only see a doctor on Tuesdays, which also happens to be the day of her longest infusion (5 hours). We always add a good hour before and after the infusion for waiting, etc. I have learned to be very patient... it doesn't bug me at all now. I'm just glad that we've made it this far!
Once we get home from clinic, Molly's physical therapist, Anna, or her occupational therapist, Kitty, come for an hour visit. They are awesome! Molly is already showing improvements. I am so grateful for them! Molly naps in between, while I get her medicines ready for the evening. All in all, I prepare over 25 syringes and 5 IV meds and pumps a day. I try to get ahead of myself whenever possible, so things are "ready to go" when I need them. Most of the time, this works, but I am dependent on the home health agency to deliver Molly's meds. Sometimes directives don't get from her doctor to the agency early enough, and the delivery is delayed until the evening. That hasn't happened too much, though.
In addition to all of the above, there is this apartment to keep in order, too. Garbage, dishes, and laundry are constants. I try to keep the place as clean as possible to avoid any germs or bacteria getting to Molly. I've washed my hands 26 times already and it is only 5PM.
By the time I hook Molly up to her IVs in the evening (these run for 12 hours), get her lotioned, changed, do an inhalant treatment, give oral meds, and put her to bed, I am pretty tired. However, compared to 2 weeks ago, I am feeling so much better about all that has to be done. I understand the pumps better, and the fact that I've only made a few silly mistakes has made me understand that I am human, and hopefully, I won't do something that hurts her. I am not living in the same fear I was when we first came home, that's for sure. It is all so worth it, and I would do even more for her if need be. Whatever it takes.
Thank you for all the support you have given me in your visits, notes and phone calls. It really helps! Molly is on her way, and God willing, things will continue moving in this positive direction. Your prayers have gotten us this far, and we thank you for your dedication and love.
God bless you!
Tuesday, June 19, 2001 at 08:48 PM (CDT)
Day +88
Tuesday is our long day at clinic. While we were there today, we saw Dr. Kurtzberg. She thinks things are going really well! She says Molly's numbers look great on paper, but what's more important is how she is acting. Molly is a complete performer at clinic these days. She has to be in an isolation room, which has glass doors, and all the nurses do funny antics outside the door to get Molly going. She promptly throws them a smile, followed by a so big, a few clicks of her tongue (her latest trick), a wave, and a big round of applause. This, of course, sends the nurses and staff into a tizzy. It is hysterical to watch. The people at Duke are so incredible. They are so sweet to Molly and me, and they make our long days at clinic fly by. I hope to have the speech therapist set up for a regular Tuesday clinic visit by next week.
Dr. Kurtzberg spoke about Molly's 100-day tests that will be scheduled soon. The battery will include a lot of what she underwent prior to transplant... MRI, echocardiogram of her heart, developmental testing and neurological observation, to name a few. They will also re-test her enzyme level as well.
I continue to count our blessings, as Molly has done so well. She is becoming more active and plodding along with eating. She vomitted over the weekend, which scared me a bit, but it was a single incident, and now she's keeping everything down again. Still no formula yet, but maybe soon. We're going to try table foods this week and see how she does! One of our goals for our discharge to Chicago is to get her eating enough so she is no longer needing IV nutrition (TPN). This, in addition to her overall well-being, good lab reports, and the absence of any major RSV symptoms, will hopefully get us closer to the windy city by August. Dr. Kurtzberg is being conservative, but I appreciate that. As I felt with our discharge from the hospital, I'd rather feel completely safe in bringing Molly home, than worried that something wasn't taken care of while we are here.
Good things happen to those who wait, right?
Lets hope so!
Thank you all for your prayers for Molly. I love reading your guestbook entries, and I really appreciate all of the support you continue to show us here. We love you so much!
Sunday, June 17, 2001 at 08:00 PM (CDT)
Day +85
A very Happy Father's Day to all the dads out there! I hope you have a day carved out to be exactly what you'd wish for. Keep loving your kids as you do!!!
A special Father's Day wish goes to John, for being the best father our children (and I) could ever imagine. His unnending dedication to their well-being continues to amaze me, and has been the sole reason that our family has remained temporarily distant in miles, but definitely not in heart. He will go to the ends of the Earth to make TJ and Molly giggle and smile, and even further to make sure I get to see both of them together whenever possible. His loyalty to his job ensures Molly will get the best care possible, even when he doesn't get to see her but once a month. He is the strength of our family, and to say we love him very much doesn't even come close. He deserves a huge pat on the back for juggling all the scheduling, aggravations, and uncertainties the last 6 months has thrown his way... he has handled all of it with such grace.
Well, sorry for the interruption but I am now the guest writer as Jen had to go give Mol some more meds. Oh yah, this is Julie. TJ and I arrived on Thursday night. He was very very excited to see his mom. On the way to the airport, he even said to the traffic, "Hey, get out of the way, I am going to see my mom!" We have spent a few days here trying to help Jen. Ther e is a ton of stuff that Jen needs to stay on top of. It is absolutely amazing!!!!! And during it all, she has tried to spend time with TJ, like going to the pool, doing puzzles, and going shopping. He has been a trooper (except for bedtime, of course!)! Molly lights up when he is around. He reads her books and plays with her. The distance between them definitely has not put a cramp in their sibling relationship. We are leaving tomorrow and it will be sad to say goodbye, but it is comforting to see Molly in this environment as opposed to the hospital. She is smiling, giggling, reaching, grabbing, kicking and even dancing! What a bundle of joy! And last but not least, kudos to the amazing job Jen has done with staying organized and on top of things. Just to see all of this would make your head spin! She deserves a huge round of applause! Thanks for tuning in to listen to long-winded Aunt Julie!!!! Thanks for your prayers!
I'm back. I have had so much fun seeing my little man again! It took Julie about 2 seconds to drop her very busy life and fly down here so that we could be reunited... she has been a much needed extra set of hands, and as always, a source of many smiles and much-needed laughs! I also wanted to send a big thank you to Susan and Jenny for all of their help while they were here. They dove right in and handled everything I couldn't. My brain was on medical and emotional overload, and they filled that gap with lots of love and helping hands.
As always, thank you for your continued prayers for Molly's strength and recovery. Love to you all...
Thursday, June 14, 2001 at 04:38 PM (CDT)
Day +82
Hello there, everybody! Reporting to you from Durham . . . it's Jenny and Susan. We have lots of news to report. It was great to have a day off from clinic. Molly was able to play with her toys and sleep lots in her own comfy bed. Even though today was a home day, it's been very busy. Both the occupational and physical therapists came today. Molly showed off her reaching and bending skills for both of them. She particularly liked reaching overhead for Susan's red hair. She also practiced rolling and standing. What a trooper to be constantly pushing herself! As you all know, Molly is an amazing little girl. It's so wonderful to see her in action! We have had such a great time watching her and learning from her. She is a role model in every way.
Speaking of role models . . . let's talk about Jenny. She should be given an honorary Ph.D. You should see her in action. From 8am through 11pm, she administers different meds and mixes many medical concoctions. On top of that, she's changing diapers, giving lotion and mouth treatments, running to clinic, and giving oral meds. To top that all off, she finds lots of time to play with and love Miss Molly. It's hard to believe Jenny does this much every day. She is totally amazing.
Because there was a "vacation" from clinic today, Jenny was able to take a couple hours. We felt so lucky because we got to stay here and play with Molly. Just getting out of the apartment to run some errands is a nice break for Jenny, and Susan and I just had a ball with Miss Molly.
Jenny and Molly have some very special visitors coming in later this evening. TJ and his Aunt Julie are arriving later (weather permitting -- it's been raining ALL day today). I don't know who's more excited, TJ or his Mom. It should be pretty exciting once they arrive.
One final note . . . John. He's back in Chicago juggling job, TJ, travel plans, and missing his wife and daughter. You are truly amazing, John. You are given the prize for the multitasking king.
Signing off for now. Thank you for continued thoughts and prayers. We love you!
Wednesday, June 13, 2001 at 02:38 PM (CDT)
Day +81
Hello,all!
Jenny and Susan are here with me... they have brought me much needed help and support, that's for sure! They are already trained on syringe preparation, lotion applications, respiratory treatments and mouth care. Whew! They are giving me and my brain a very good break.
They are also being very supportive friends. I don't think they knew what they'd be getting into when they arrived, but lots has already happened, and they have been a great source of comfort for me.
Our dear little friend Melanie passed away last night. Her mom, Robyn, called me this morning to tell me the news. Needless to say, I am devastated... I cannot imagine the depth of what she and Melanie's family are feeling right now. The pain of losing so many children here is getting to me. It is very difficult to keep seeing families fight so hard for their kids, only to surrender to the process in the end. It's not fair, and it makes me very sad. I am trying to keep faith that God works in mysterious ways. Please keep Melanie's parents and her older brother, A.J. (age 3) in your prayers. Melanie's website is www.caringbridge.com/nc/melanie. I'm sure they would appreciate any words of comfort at this difficult time.
Thank you for checking in today. In the midst of all the sadness I feel, I continue to count the blessings God has given us. Molly is doing great. Her labs and numbers are good enough that we get a day off from clinic tomorrow!She is totally enjoying all the attention Jenny and Susan are giving her, and hamming it up quite a bit!
In your prayers, please keep in mind John's Uncle Bill, who underwent a successful bypass surgery yesterday.
God bless you all.
Sunday, June 10, 2001 at 02:15 PM (CDT)
Day +78
Hello, all!
Thanks for checking in with us! Molly is doing really well, in fact, we passed up a visit to the BOPP room today and got the day off! YEAH!
Molly's been sleeping a lot today... catching up for lost time, and a side effect of all the meds she's taking, I guess.
John left today. It was hard to see him leave... he gave me lots of strength while he was here, and even stayed a couple of extra days to make sure we were ok! Also, big thank you's to John's family,for taking such good care of TJ while we were both here. You are so wonderful to us!
In addition,we've had many generous offers for airline tickets since we've been here. We'd like to thank Jan and Tom Myers, (TJ's preschool teacher) our friends back home, for giving us the airline ticket for John's trip here. It is such a huge help and an extrememly generous gift!
Molly and I will be flying solo for a couple of days, then Jenny Ehlert and Susan Clarke are visiting this week! I will need their extra hands and brains to make this still un-oiled machine work. This will be our first full week of clinic and therapies, and it should be an adventure.
Thank you for your continued prayers for our family, especially Molly, and her friends here at Duke. We count you all as blessings in our lives each and every day.
P.S.I've uploaded some new pictures!
Saturday, June 09, 2001 at 07:37 PM (CDT)
Day +77
Hello from Durham! Things are moving along here... Molly continues to eat well, and is loving life outside the hospital! She is pretty patient with all the "stuff" hooked up to her and rubbed on her, which is making it a little easier for me. Whew!
We took her to the BOPP room today on the ward, and the doctor was pleased with her labs and how she is doing. We're going to continue to use oxygen as needed, and hopefully wean her off of it as soon as her lungs are ready.
Otherwise, we'll keep introducing food to her as long as she'll tolerate it. The sooner she eats enough food to sustain her nutritional needs, we can take her off the nutrition IV she gets each night for 12 hours. We're really pleased with the progress she's making with eating!
Speaking of nutritional needs, tonight, John and I were given a catered meal from Nana's, one of the best restaurants in Durham. What a treat! Not only did we feast on appetizers, a huge meal, dessert, and wine, but they sent a chef to prepare and plate the meal right in our own little kitchen! It was incredible... and we are stuffed.
We took Molly on a walk outside after dinner, which she loved! It is so much fun to watch her kick her little toes in excitement each time she goes outside!After our walk, she got her first bath in the tub since her transplant, which she hated! But soon after, she managed to blurt out a few giggles for us when I was changing her dressing. Of course, she went to touch her central lines, and I screamed "NO!", which instead of scaring her, absolutely cracked her up. She laughed out loud at me! We haven't heard a giggle since March! Good thing I had a mask on... I was laughing hysterically, too! Hopefully, this scenario is not painting her future as a rebel. She taught me a lesson... and quick! From now on, I'll never be able to scream "No!" at her again.
We want to wish very happy birthdays to Molly's cousin Courtney and her Grandpa Ahern today. Also, belated wishes go to her Grandma Ahern, who's birthday was yesterday. We're sorry to be missing the family party, but we send you all our love.
John leaves tomorrow afternoon. It will be hard to say goodbye after his long stay here. He has been a major help in keeping our wits about us.
Thank you for your love and encouragement. We appreciate you stopping by to read Molly's site today! God bless you!
Friday, June 08, 2001 at 09:20 PM (CDT)
Day +76
Just a brief update to let you know things are the same in our busy world outside of the hospital... We're trying to get our brains around all the medical information we've taken in over the last week, and every day brings a bit more peace of mind.
Molly continues to do very well. She is so happy being at the apartment, and surprises us with something new each day. She is now keeping down bananas, applesauce, and rice cereal with Pedialyte!
Her new physical therapist, Anna, is great. She'll come to the apartment three times a week to work with Molly, who isn't afraid to show off her newly acquired moves. Once she does something, she proudly looks to us with a huge grin! It is very encouraging to see.
I realized one of the pictures didn't upload correctly, so I have fixed it. Please take a look, so you can see why it was so easy for us to remain "positive" while we were in the hospital. With nurses like that, how could we not smile? We really miss everyone on the ward, and we look forward to seeing them again this weekend! (We'll visit the Bone Marrow Out Patient Room, the BOPP, on weekends, while the clinic is closed.)
Thank you for all the emails and guestbook entries of support and congratulations! They mean the world to us. Please keep Molly and all of her friends on the ward in your prayers, especially the family of 13-year-old Hilary, who passed away this week.
We love you!
Wednesday, June 06, 2001 at 10:30 PM (CDT)
Day +74
Well, we made it! Whew! Yesterday was a very long day, but everything worked out. Molly became very aware that something was up yesterday, as lots of people were coming in to say goodbye, and the room walls became more bare as the day went on. She's started showing a bit of separation anxiety with me, which, I guess, is to be expected after our long "vacation" together. Every time I left the room, she cried incessantly. It broke my heart, but I love holding her and calming her down. Molly had a confetti parade leaving the ward, and we were off! Her best buddy, Allison, came over to be part of the celebration.Once we hit the road, Molly kicked her feet in the stroller and was chatting and singing in the car. Her little voice told of her excitement to see the world again... it was so great! When we got home, she played in her bed, and was quite the entertainer. I think she is really happy to be out of the hospital!
After our late departure from the hospital, we were greeted by two home health agency representatives at our apartment doorstep. So, before we even had a chance to bring all the bags in, both John and I were immersed in respiratory equipment and IV pumps.... YIKES! By 9:30PM, the home health nurse left, and we were exhausted.
Before we knew it, we were up early to start our first day out-of-the-hospital adventure... Blood draws, clinic visit, IV pumps, oxygen tanks, meds, schedules, phone calls, nurse visits... yes, my head is still spinning. John's been a big help in getting things organized, and is awesome at putting huge grins on Molly's face! He also knows exactly how to motivate her to move... He had her standing at the couch tonight- a big feat for Miss Mol! She was so proud of herself! We hope to get started on physical and occupational therapies here at the apartment by next week. She is already showing progress!
Thank you all for following Molly's journey outside of the hospital. We really appreciate your prayers for her strength and healing to continue. Although we are thrilled to be out of the hospital, there is a bit of an empty spot in our hearts for all of the families, nurses, doctors, and staff we came to know so well on the PBMT ward. I've updated the photo album with pictures of the wonderful people who took care of us during our stay. Please keep them in your prayers- they are incredibly gifted and so caring...
Big smiles from Durham!
Monday, June 04, 2001 at 03:58 PM (CDT)
Day + 73
We just got final word from Dr. Martin (one of Dr. Kurtzberg's associates) that Molly will be discharged tomorrow! For the last few days, her sats have been falling and she was dependent on the blow-by oxygen again, and then, all of a sudden, she's off the blow-by and satting at 95 on her own all day today! We were able to take her for a walk off the ward this afternoon. We went to the children's clinic to see the fish tank, and through the gardens here. Molly was so happy, she kept kicking her feet together in the stroller! It was a joy to see.
The doctors think she's doing great, too. She was "holding court" again while they were here: waving, smiling, and giving orders with her demanding "Da da da's!" It was pretty funny. They agree that Mol has her old personality back, and that the tranplant may have given her a little "attitude" as a bonus. Ha! That's the truth. We have been dealing with her newly recaptured cry, which has become a piercing wail in less than 24 hours. She did NOT forget how to get our attention, that's for sure! However, she is also becoming much more cuddly again, reaching out for mom or dad, which just melts our heart. Each day unwraps another gift she has to share.
Needless to say, we are thrilled that Molly has made it this far. We thank God every day for the blessings He has given us. We are so proud of our daughter's strength and determination to withstand a hospital stay of almost 85 days, not to mention the tribulations of each step of her individual transplant journey. Your prayers have been so integral to Molly's progress, and we know that they'll continue once were home. We're not out of the woods yet, but a step closer to the edge, that's for sure. We are so grateful for your positive thoughts.
Our days will now focus on clinic trips, lots of home health issues (IV pumps, nebulizers, oxygen tanks, oral meds, blood draws), continuing therapies, and oh yes, hair growth. (Molly is accumlating the much anticipated post-transplant hair!) We will update her pictures soon, so you can continue to see her new "look". Hee hee! Tomorrow will be probably the busiest day we've seen yet... Lots of packing to be done, and many details involved in getting Molly settled at home. We will update again as soon as we can.
Many, many hugs to you all!
Saturday, June 02, 2001 at 08:17 PM (CDT)
Day +71
After a long night with Dad at the hospital, Molly slept most of the morning away. She had a great physical therapy session, and was off to snooze-ville by the time I arrived. John went back to the apartment to catch up on some much-needed z's, while I spent the afternoon with Mol.
Once she woke up, we played, she sat in the high chair looking out at the gardens, drank some Pedialyte (and kept it down!) she had a bath, watched some Elmo, and performed for my video taping session. What a full day! She seems to be doing much better, and we are so pleased!
This evening, Allison came over to play with her, so John and I could go out on a "date". We went out for dinner and for a walk in the Duke Gardens. It was a beautiful night outside. Thank you, Allison, for being OUR best buddy! You take good care of our whole family!
After yesterday's update, I saw some of you have already gone to Allison's site... Thank you! It means so much to the families up here (ourselves included) to get messages from total strangers who are praying for our kids.
I have one more request to make tonight. Late last night, our little friend Melanie (8 months), had to be intubated and taken back to the PICU, where she remains on a ventilator. Obviously, this change of events was not what her family had hoped or planned for her, and they are scared. I know Robyn,her mom, always asks their readers to think of Mel at 9PM each night, and send her healing hugs, so I'm passing this on to all of Molly's faithful friends. Mel has had a rough go here, and needs our bit of extra strength now more than ever.
Along those lines, as I drove home from the hospital last night, I was listening to the radio. A local station here is holding their annual drive for Duke Children's Hospital. Among many sad and happy stories about kids who have passed through these halls, were songs appropriate to the theme. Of course, being a parent of a child at Duke, the stories hit home... so many children here are suffering, the inspirational stories of recovery, and testaments to what an awesome place this is. I was bawling my eyes out by the time I reached the apartment, and had to stay in the car until one particular song ended. The lyrics were,
"I believe there are angels among us, helping us through our darkest hour of need.
They teach us how to live,
They teach us how to give,
They teach us how to love...above all."
As I sat there, I couldn't help but think of all the people (many whom I don't even know!) who have touched our lives because of our little girl and her illness. Day in and day out, you continue to read her page on your computer screen, you leave us notes, send us emails or cards, or call us... to remind us how much she is loved and thought of. Your prayers are unnending, your hope is eternal, and your strength travels the miles to our little home here in 5204.
You truly are angels in our lives... and we thank each and every one of you.
Friday, June 01, 2001 at 07:25 PM (CDT)
Day +70
Today was a very rainy, dreary day in Durham. Molly started her day off on a not-so-good note, as she got sick numerous times this morning, and was a sad, wet noodle. She hadn't had anything to eat in 48 hours, so it was terribly painful to watch her wretch like that. Yuck.
Later this afternoon, she had a test (the name is too long to mention), where she swallowed a bit of radioactive liquid (?), and was observed on an x-ray table for 30 minutes. The docs saw the liquid go through to her stomach, and did not observe any reflux occurring, but as soon as she sat up, she heaved. Hmmmm. So much for that test. The results say she does not have reflux, but her docs here are still going to treat her for it (as well as GVH). Molly was less than happy to lay still on the x-ray table under a mask for that long, but she is such a trooper. Once we got back to the room, we decided to feed her, and she promptly drank 2 ounces of Pedialyte... which has not returned for a second viewing yet! Yeah, Mol!
Dr. Kurtzberg came for a visit today, and thinks Molly is doing well. She knows it will take some time for Molly's tummy and lungs to heal, so she feels better about a possible discharge next Tuesday. Molly's sats continue to be on the rise, which is comforting to all of us. We'll get her out of here yet! (All joking aside, we're pleased that the docs are taking these extra steps to assure us of Molly's health, even if it means a few more nights in the hospital.)
Once again, we thank you for your prayers for Molly. We feel them working, and we know she continues to be embraced and healed by all the love you have shown her.
We also want to ask you for some extra prayers for a few other children on the ward. After two young boys passed away last weekend, another boy (12 yrs. old) had to go back to the PICU last night with respiratory issues, so keep him and his family in your thoughts. Another little girl's family learned, more than 30 days after her transplant, that her leukemia cells returned. They are devastated. She will have to endure another transplant in the next few weeks, which will be preceeded by a second round of chemotherapy, plus radiation. The little girl, Allison, is around TJ's age, and they have a 1-year-old baby boy at home (just the opposite of our situation). The whole ward was hit pretty hard by this news, as we've all come to love this little girl and her family. Please pray for a successful second transplant for her, and for strength for her family, too. They are so sweet, and so scared. They need all the prayers they can get right now. (If you are interested in visiting her site, it is www.caringbridge.com/al/alisonlamp.) There are adorable pictures of her zooming around the BMT halls! She is too cute!
Thank you for caring so much. We really appreciate you stopping in to check on Miss Molly and walk through this journey with us.
Thursday, May 31, 2001 at 06:11 PM (CDT)
Day +69
Hi, everyone! Thanks for checking in on Molly today. Things are going just about the same. Molly is VERY happy to have her Daddy here. She has been non-stop smiles since he arrived.
Good news to report: Molly's test for RSV came back negative! Her congestion may have been a result of the dryness in the room's air, as has improved a lot since we got some humidified air running.
Her bouts of vomitting have continued, however. The doctors are now talking about doing a non-invasive test to see what's going on in her GI tract. We're still waiting to get all the details on what's involved, and will let you know more as we learn about it. They haven't ruled out reflux just yet, so hopefully, this test will provide them with some useful information. In the meantime, she'll continue to be treated for GVH.
We continue to take Molly out on hallway walks about once a day, which she enjoys. She is getting a little better with the mask each time we go out. I put up new photos for you to enjoy- there's one of us in the hall, so you can see the get-up she wears.
Her oxygen saturations seem to be improving slightly, for most of the day. This is definitely the direction we want to go before our departure next week.
Thank you so much for the continued prayers for Molly. We love her so much, and we're so proud of the strength she's shown us on her journey so far... we know we'll be home soon, one step closer to full recovery! Your prayers and support have certainly helped us get to this point. We are, as always, extremely grateful.
Wednesday, May 30, 2001 at 12:58 PM (CDT)
Day +68
Hello, all!
Well, it looks like we're here through the weekend. No use in rushing things... Molly's sats comtinue to be on a downward trend, sticking mostly around 88-91 (we want them to be consistent at 95 or above). Her congestion continues in the AM and PM mostly, and we haven't gotten the viral battery results back yet. The docs feel the RSV will continue to affect her lungs this way, and aren't too worried, but would like to send her off on a better note than her current condition shows. I feel the same way. I'd rather celebrate her leaving the hospital, than worry about bringing her home.
Patty left this morning, and Uncle Bob stopped in for a quick visit! It was great to see him! We miss our silly Aunt Patty already... she was such a big help and support to me. The nurses continue to comment on how Molly lit up while she was in the room. I'm not surprised!
John just arrived to a happy little Moo Moo talking and laughing on the floor- what a nice way to begin his stay here! He'll be here through the 8th of June. TJ and Aunt Julie will meet us at the apartment (hopefully) next week. Yeah!!!!
Thank you for all of your good thoughts and positive vibes you are sending our way. Just like our admittance to the hospital, the third time will be the charm for our discharge, we hope.
Love you all!
Monday, May 28, 2001 at 06:05 PM (CDT)
Day +66
Happy Memorial Day from Durham!
Today your update is being provided by Molly's Aunt Patty. Please forgive me for not being as eloquent as Jenny, I didn't seem to inherit the same literary trait that she did.
The big news today is that Molly got a pass to leave the hospital for a couple hours! She looked so cute in her stroller and mask. We went back to apartment to play for a while and, of course, Molly decided to sleep for half of the time. I think she enjoyed being out in the real world for a while. It wasn't quite a "Night on the Town", but that'll come in time. They are still talking about a possible discharge on Wednesday, so be sure to check back tomorrow for more details.
Molly's respiratory status continues to improve, although she is still a little bit congested. She's also having a little trouble coming off of some of her meds, I think it's officially called withdrawal, but I don't like that term for our little Molly. Jenny and I don't like the reaction Molly's giving either - she seems to have developed a high-pitched screach that is so sad to listen to. We hope that goes away soon. Fortunately, for most of the time that I have been here, Molly's been smiling, clapping, and doing all of her tricks. For those of you who know how goofy Jenny and I can be when we get together, we're making sure Molly follows right in our footsteps!
I apologize if this update is getting too long, but I wanted to take this opportunity to say a few things about Molly's parents.
First of all, we all know what a great Mom Jenny is to be here going through all of this with Molly. What those of you who haven't been here to visit don't know, is how much she has had to endure. Watching and helping your one year old baby girl through the pain, the medicines, and all of the tests can be incredibly hard. Jenny is handling all of it with such strength and support. All of the nurses have commented to me about what a great job Jenny is doing. And to add to it all, she misses TJ more that she can say, but she won't let it get her down. She is an amazing woman.
Then there's John. Not mentioned very often in these updates because he's back in Chicago tackling a demanding job and the role of single parent to a lively four year old boy. Living a few blocks away from John and Jenny, and having a four year old boy myself, I fully appreciate how much work John is dealing with. I can't imagine doing all of the schedule juggling, shopping, school activities, and playing while working full-time and not having a spouse to split all of it with. On top of it all, having the worry of his sick baby daughter miles away. He is definitely a fantastic Dad.
Finally, I need to mention what a wonderful marriage Jenny and John have. It is what makes them such great parents. I know what it's like to have a long distance relationship, but not one that is full of stressful decisions, caretaking of two children, and not having much time to themselves. Be sure to think of them when they celebrate their wedding anniversary next month because what they have deserves celebration. We should all look to them as models.
All right, I've taken up enough of your time. In closing I'd like to thank everyone for their prayers and thoughts. Molly seems to be doing very well, and it is due to all of your support. Two young boys, Chris and Michael, passed away this weekend. Please keep their families in your prayers as well. It is a constant reminder how fortunate we have been.
Saturday, May 26, 2001 at 04:21 PM (CDT)
Day +64
Hello, all!
The occupational therapist who has been working with Molly since we got here, tried feverishly last Thursday to get her to tolerate feedings without vomitting. She was here every three hours, adding a bit more Pedialyte to each feed. Molly semi-tolerated it, keeping more than half down of what she took in, but she pretty much "blew a gasket" after having a full bottle of formula at the end of the day. She was soooo sick, it broke my heart. This only reassured the docs that her problem was not just a physical one, but that something more was happening inside. Today, Molly started on a new medicine for graft vs. host. The docs decided this was the best route for her, and are proceeding without an endoscopy. Her symptoms, slight as they are, are indicative of GVH, and rather than take the risk of an invasive procedure, they are going to see what happens with this drug. This new medicine is given once or twice a week, for about 8 weeks. She will get her treatments in the clinic once we're back at the apartment. Hopefully, we'll see some results, but probably later rather than sooner, I'm told. (Needless to say, Molly has no interest in eating anything since Thursday's episode... she's pushing the bottle away, but who could blame her?)
On a brighter note, Molly is showing us she is gaining strength by pushing up on her arms to play peek-a-boo in her crib, and she's making efforts to reach, pull, and roll again! Each little step is a huge success, and I am so proud of her! We continue to take our walks in the hallway, and Molly is getting much better about wearing a mask. The next big step will be keeping a hat on. She loves to pull them off!
She also surprised us today, as Patty was holding her, she asked, "where's Patty?", and Molly tapped Patty's chest. She did the same thing to me when we asked "where's Mommy?", and waved her hand when asked, "where's Molly?" Mol gets big applause for her new skills! It's so exciting to see them appear!
Speaking of excitement, the word is that we're shooting for next Wednesday to blow this popsicle stand. However, "shooting for" are key terms in that phrase, as we know all too well that day may come and go, and we'll still be here. Although Molly's disposition is improving greatly, and her interest in her toys and desire to play has increased, she still spends the first half of the day feeling "poopy"... In addition, she's become more congested in the last few days, which, of course, has me worried to death that the old bugger RSV is creeping back, but I don't even want to think about it. Positive thoughts.... positive thoughts. For now, a touch of Sudafed is doing the trick! They may do a respiratory/viral battery on Monday if the congestion persists.
Dr. Kurtzberg will give us her final blessing that Molly is well enough to go home... when SHE feels she is ready. Thank goodness! (While the thought of moving forward in this process is tempting, I am in no rush to leave if Molly is not ready.)
Patty is adding quite the ray of sunshine to our room. She makes both of us smile! I'm also enjoying Baby Baxendale's kicks and fidgets... He/she gets a little perturbed when Molly hogs all of Patty's lap, and may end up kicking her clear across the room one of these times- hee hee!
Thank you for tapping into our world for a moment today. As always, your prayers are very much appreciated, and are helping to bring much healing power to Miss Molly. Enjoy the holiday weekend! God bless you!
Wednesday, May 23, 2001 at 09:23 PM (CDT)
Day +61
Well, no news on the endoscopy. It seems like the docs want to wait it out a bit more before making a decision. Molly had a pretty good day. She's still nauseous and vomiting, but now after she "gets the bugs out", she's happy and smiley! That's been such a welcome change. It makes me think she's really feeling better. (Doesn't make watching her go through the agony of it any easier, but at least it relieves her.) They also tested the Ph of what she is spitting up, and it came back normal to high acidity, with no blood. That's good news! Her blood pressure is also coming down with the help of a new drug.
Molly got to go for another walk in the hall with us today- even Grandma got dressed in yellows for the trip! We had fun, and it was nice to be able to give my mom a tour of the ward this way.
Allison came over tonight so my mom and I could go out for a send-off meal... She leaves early tomorrow morning. Thanks, Grandma, for all you did for us! We'll miss you! (and thank you, Allison, for being so generous with your time! We love you!)
Aunt Patty arrives on Friday morning for a few days. We are all very excited for her to visit... it's been a long time coming. With her being 7 months pregnant, we had to get it in before Molly's new cousin hits the scene! Hee hee!
Thanks for your good thoughts for Molly, and for your notes in the guestbook. As we've learned here, anything can happen at any given moment, so your prayers for her continued progress mean the world to us.
P.S. I added a few new pics to the photo album. Enjoy!
Tuesday, May 22, 2001 at 08:48 PM (CDT)
Day +60
Wow! Today was such a great day! Although Molly is still vomitting and her blood pressure is still high, her disposition is improving! She is much more lively and happy, it seems, even without medicine to make her that way. This makes me sooooo happy.
Today, Joan came by to sit with Molly, so my mom and I could do a little shopping. We had lots of fun buying Molly new clothes and getting out for a bit. (she is growing lots with the help of steroids- did you check out those cheeks in her pictures?) When I returned, Molly waved and smiled and giggled and da-da-da'd me, like she was reporting on all the fun events that occurred while I was away. It was so great! It made me feel so good, too, that she recognizes when I come into the room. A big thank you goes to Joan, a rock-a-baby volunteer and our good friend here at the hospital, for giving Molly's mom some much needed time at the mall!
Then, even bigger news... Molly's nurse tonight, Catherine, let us go for a walk in the hallway of the BMT ward... AND Molly got to ride in the newly acquired BMT baby swing!!!! She loved it! (I thought she was a tad big for it, but oh well...) She totally smiled and kicked her toes and told us how great it was! Thank you, Catherine, for such an exciting night! I had so much fun walking Molly down the hall. She was so interested in everything, as she has never been outside the 4 walls of her room (except to go right out the door to an x-ray)! All the other parents walk their children up and down the halls daily, and it is so much fun to see the kids, but because she's been on isolation the whole time, Molly's never had the chance! She wore a pretty teal mask and was draped with a lovely yellow party gown for her big debut. (You could barely see her eyes peeking out from the mask, she was so covered!) Hee hee! We had fun. Stay tuned for new pics of the big night.
Tomorrow, the docs will make a decision about whether or not to go ahead with an endoscopy for Molly. This would involve sedating her and placing a tube (with a camera on it) down her throat and into her stomach. In addition to seeing the inside of her stomach, they could also take biopsies if necessary, to determine whether she is suffering from a virus, an infection, or graft vs. host. It seems a bit risky to do this when her symptoms are so mild, but tomorrow will tell. More details will follow as I learn of them.
Thank you for all of your prayers. Please say an extra prayer for Molly's doctors, so they can reach a decision about the endoscopy that they feel is best for her. (No one here seems too excited to rush into an invasive procedure, but we'll see...)Good night and God bless you!
Monday, May 21, 2001 at 07:13 AM (CDT)
Good morning, Molly fans!
Thought I'd throw a twist into your day and update the site in the morning! Not too much has changed since the last update...
Molly is breathing room air (although she threw us for a loop on Saturday, when she became completely dependent on oxygen, and had to go back on a nasal cannula. UGH!)I really thought we were headed in the wrong direction, and then, POOF! Molly changed her tune and threw the blow-by and nasal cannula to the side, and went back on room air!It was very strange.
Dr. Kurtzberg was here this weekend. She is pleased with the way Molly looks, and she thinks the vomitting may be due to a touch of graft vs. host in her tummy. (This means that her new cells are having a little trouble assimilating to their new home, and are "rebelling" a bit.)They switched her to a different anti-GVH med to see if she improves. Hopefully so!
Molly's disposition has improved a little, and she's flashing some great grins every now and then. Maybe the new meds are working!
Grandma, unlike Molly's cells, is assimilating to her "new home" quite well. She is zipping around Durham quite nicely in our van. We're so glad she's here...
Thank you all for your prayers for Molly. Please continue to pray that her new cells are happy and in accord with her body, and that she continues to improve with her breathing and vomitting. Have a great week! We'll be back in touch in a few days...
Friday, May 18, 2001 at 04:50 PM (CDT)
Day +56
Hello, all! We're still hangin' in here at 5204. Molly's lungs have improved well enough for her to be off the blow-by oxygen. She is still needing inhalant treatments, and still sounds congested, but her oxygen saturations are much better... and all on her own! Yeah, Mol!
Unfortunately, the trade-off for the improvement has been an increase in nausea and vomitting again. Although she is breathing room air, she is feeling really yucky, and throwing up everything she eats. It's so sad, too, 'cuz Molly LOVES her bottles. They seem so good going down, but they don't stay with her for too long. It's horrible to see her wrenching so much. And the drug that made her "peppy" last week, now just zonks her out cold.
So, she is doing a lot of sleeping and little playing. She isn't very smiley, nor giggly. The docs are still a bit stumped by what is causing her "poopiness", so we're gonna give it a few more days to see if anything changes.
Her counts remain around 13, which is awesome, and all her labs are coming back completely normal! She just needs to turn this one last corner... then maybe we'll be discharged. I am so proud of Molly for hanging in so well through all of this!
Many of you have asked about Melanie, the little girl who was our next door neighbor before heading over to the PICU. She just got off the ventilator, and is doing great! She should return to the ward very soon. We are so happy for her and her family!
Unfortunately, another BMT patient passed away last evening. Marcus was a darling little baby boy, around 1 year like Mol. He had a long struggle here. Please keep his family in your prayers.
Thank you for praying for Molly and our family. The days are still flying by for us, and we think often of our return home. I added some new pictures to the site, including one of TJ... his big debut!
Wednesday, May 16, 2001 at 05:13 PM (CDT)
Day +54
Hello, all, and thanks for checking in on Molly's progress. Things are looking a bit better than a few days ago. Molly's test for RSV came back negative, so the doctor on this week discontinued the Ribavirin in the tent. Whew! It seemed the changes they made in her drugs were more beneficial to her lungs (and her disposition) than the Ribavirin was, and today, she actually went for awhile without the blow-by oxygen! Her counts remain around 11-12, which is good. Molly's blood pressure continues to be high, and is being monitored closely.
Dr. Kurtzberg has visited Molly a few times during the last week, and is pleased with the way she looks. Her lungs sound better each time she visits, too. We took a tiny detour, but we're headed back in the right direction, I think!
Allison Coho left yesterday. She was such a nice pick-me-up! Everyone here loved her, and the compliments were flying about her craftiness on the bulletin boards. Molly enjoyed seeing her, too. Allison has such a way with children, she really perked Mol up!What a blessing to have such a good friend.
Grandma Ahern is here now, and enjoying her time with Miss Molly. She is handling all the monitors and beeps in the room quite nicely. She held Molly today, which was a treat for both of them. We're glad grandma is here to take care of us!
Thanks again for checking in. It is so uplifting to read your guestbook entries and know Molly isn't far from your thoughts. Your prayers continue to bring her good things, and we are grateful. Hope you are all doing well!
Love, Jenny
Monday, May 14, 2001 at 04:36 PM (CDT)
Day +53
Hello, everyone! You're getting a guest writer today! It's Allison Coho, Jenny's good friend from college. I'm here visiting from Columbus, Ohio. We're sorry there hasn't been any updates for a few days, Jenny and I have been busy putting our creative talents to the test! We brightened up the PBMT lobby by redoing the bulletin boards. I can definitely say we brought some cheer to the people passing through. Many of you know that Jenny and I make a very crafty team!
I've been very impressed with the unit here at Duke! The nurses are so positive and helpful. Molly has really made a lasting impression on them. She really enjoys turning on the charm when the doctors, nurses, therapists, and other various visitors come to the door. She starts waving her arms and babbling "da da da." She's also developed some pretty funky dance moves! Jenny says it's great to see Molly becoming more active again! I'm determined to teach Molly to say "Ma Ma" before I leave! We were hoping she'd say it on Mother's Day, but she doesn't seem to be very interested. The Speech pathologist met with Molly for the first time today. Of course, she fell in love with Molly's playful attitude. She wants Molly to work on saying "Ma Ma" as well as teaching her basic sign language. Jenny thinks T.J. will pick up the sign language easily and be able to teach Molly how to communicate.
Jenny has fully impressed me with her strength, patience, and unconditional love for Molly! She has learned so much about Molly's condition and care. You should see her change Molly's dressings, take blood samples, and change her central line caps. She's going to come out of this whole thing with an RN degree! Cheryl, one of Molly's nurses, is now calling Jenny "Super Mom!" (Well deserved!)
Jenny received some disappointing news on Saturday. She was hoping Molly would be discharged on Wednesday, but the doctors didn't like the way her lungs sounded and thought she needed more Ribavirin treatments. Even though Molly's tests for RSV have come back negative, the doctors still feel her lungs aren't fully recovered from the RSV. Molly hasn't entirely enjoyed "going under the tent," but they've been trying to plan her treatments around nap time and bedtime. They will be at the hospital for at least ten more days. Jenny and Molly also got to go on a field trip today to get an Echocardiogram to test Molly's heart. Her heart is in good condition! Molly's cell count is 11.7, which is excellent since she is no longer taking the growth hormone. Grow, cells, grow!!!
I have to go home tomorrow and Jenny's mom will arrive tomorrow afternoon. I know Molly will be happy to see her Grandma! Molly's best buddy, Allison, is coming to play with her tonight while Jenny and I go out to dinner. Thank you for all of your continued prayers and support for John, Jenny, T.J., and Molly! They really make a difference!
Happy belated Mother's Day!!!
Saturday, May 12, 2001 at 10:31 PM (CDT)
Day +50
Well, I guess we've made it to the "supposed" half-way mark... We're still taking one day at a time.
Miss Mol has not been real happy this week. Her vomitting has increased, and she seems to feel just plain poopy. Something is causing her pain, which no one can figure out, and she is still needing that extra bit of blow-by oxygen.
Today, the doctor decided to put her back on Ribavirin. Even though she has tested negative for RSV, he feels her lungs may still be suffering from the virus. Of course, Molly doesn't seem to mind at all, but now we have extra furniture in the room, and Mol gets to go "camping" again...for 8 hours a day. The hope is that this will help improve her lung status and oxygen saturations. Needless to say, I assume our discharge date will be pushed back as a result of this decision.
On the other hand, the nurses have found a wonderful anti-nausea/relaxant that puts Molly in the absolute best of moods! She goes from "poopy" to "peppy" in no time! Although it only lasts a few hours, I'm interested to see how her breathing is effected by it, and will be sure to ask for it more often over the next few days.
Allison Coho arrived today! We are looking forward to spending a few days with her. Put two elementary ed teachers together and what do you get? New bulletin boards in the PBMT lobby! Yep, we will be crafty! I can't wait... the boards could use a little pick-me-up, and we are prepared to do just that. (Remember it was Allison who provided all the cute decorations for Molly's room? She's got lots of goodies up her sleeves for the bulletin boards!) It will provide a much needed change of activity, and I'm sure a bunch of laughs, too.
Molly's best buddy is coming over on Sunday evening to play with her, so Allison and I can go out to dinner. Being Mother's Day and Duke's graduation, every restaurant will most likely be filled to the gills, but we don't care! It will be nice to get out of the hospital and catch up.
To all the mothers who are reading this update, I want to wish you a very Happy Mother's Day. Keep doing the amazing job you do at loving your children. I will say an extra prayer to the Blessed Mother for all of you.
And to all of Molly's readers, thank you for your continued prayers and hope for her. You've been in this with us for 50 days too, so congratulations to you as well. We couldn't do this without your love and support! God bless you!
Thursday, May 10, 2001 at 10:47 PM (CDT)
Day +48
Hi, all! This will be a quick update, as I am still tired and trying to catch up on sleep after my visit with TJ. He wore me out! We had so much fun together... he was, once again, the best medicine for everyone here. Molly was enamored by him, and would grab his arm to get his attention at her crib. She loves him!
Molly remains dependent on the blow-by oxygen. Her lungs will require much more time to heal from the RSV, it seems. Unfortunately, as the docs start to talk about discharging us, this means we'll be taking her home with oxygen and a nebulizer for inhalant treatments. They've added some new meds to her inhalant treatments to see if her breathing improves enough to discontinue the blow-by air, but we need to wait a few days before we see any effects.
In the meantime, they have switched most of her IV meds to oral meds, which hasn't been good for Molly. She spent most of the last few days feeling nauseous and vomitting. She has not been her happy self, to say the least. Hopefully, they will try to make the switch a bit more gradual, and she'll handle it better.
The home health nurse has been teaching me how to use IV pumps for our return to the apartment. Right now, it's a bit overwhelming to think about such a huge responsibility, but I'm sure it will become second nature soon enough.
The wound care nurse visited us today with some tips for Molly's skin issues. Hopefully, these new gel dressings will keep her skin intact and her central line sites free of infection.
Otherwise, Molly figured out how to bring her blow-by oxygen to her mouth today, which looks hysterical! She will search around her bed to find it, and it always goes straight to her mouth! After awhile, I offered her a bottle, and she grabbed it and gulped down a few ounces... maybe she was trying to tell me something? I'm just glad she likes the bottle again, even if she can't hold on to all the formula she drinks.
So, we continue to take one day at a time. We're shooting for next week's discharge, but not holding our breath until it really happens. We need to smooth out these few "bumps" before we go anywhere...
Thank you for all of your good thoughts and prayers for Miss Mol. We love you all so much!
Tuesday, May 08, 2001 at 10:05 PM (CDT)
Hi from John and Molly,
Jenny and TJ are back at the apartment sleeping after a fun filled couple of days.
The big highlight was TJ's birthday celebration last night. Molly's best buddy Allison was nice enough to come over and stay with Molly while we headed back to the apartment for the birthday bash - TJ and Jenny had decorated with streamers and party hats so we would be ready to go. The "bash" consisted of the three of us eating some cake and ice cream and then playing the traditional games...pin the tail on the donkey, musical chairs (interesting with only three) and TJ's favorite, hide and seek. While it may have seemed mundane compared to most parties, TJ appeared to really enjoy having our undivided attention - he definitely filled the role of being the "life of the party".
TJ's sister is continuing to show signs of improvement. Her counts are still very promising. In fact, her white blood cell count jumped so high that the doctors are going to take her off a growth hormone since her body is doing such a good job producing them. Her lungs remain the area that is still in need of more healing. While her chest x-rays don't show anything of worry, there is still some lingering congestion that at times can interfere with Molly's breathing (she needs some "blow by air"). The doctors tell us that the lungs should continue to improve on their own and that we will just watch them closely.
As a final note, Molly had her first acting role today. Our primary doctor here, Dr. Kurtzberg, is one of the pioneers in the research and use of cord blood. As a result, the BBC was here doing a documentary on Dr. Kurtzberg and ended up following her into our room to tape her visit with Molly. If anyone is heading over to Europe over the coming months, keep an eye out for Molly's debut.
TJ and I head home tomorrow but before we left wanted to thank everyone again for staying so close to our family over the past few months. Your prayers, support and words of encouragement have meant so much to each and every one of us.
Take care
Saturday, May 05, 2001 at 08:05 PM (CDT)
Day +44
Hello, all!
I hope you are doing as well as Molly is! Today was her best day yet... she showed us so much more of her personality, it was awesome! She is feeling better, it is obvious, and such a joy.
Her white counts went up to 36.2 on Friday (Wow!), so they are going to cut her GCSF hormone down to 3 days a week and see what happens. Her l-iduronidase enzyme level (the enzyme she was missing before) came back at 10.4, which was really good news. (To give you insight, she came into this whole ordeal with a level of 0.1, and TJ, as a carrier, is at a level of 5 or 6... so 10.4 is a super start!) We were very pleased to hear these results. Although it will take some time for the enzyme to get to her brain, and cannot reverse the effects to her bones, it is already starting to work everywhere else in her body!!! Yeah, Molly!
Molly is still needing a bit of oxygen. She seems to be on one day and off it the next, but the doctors don't want to take any chances in sending us home while she still needs it, for which I'm relieved. They want her to be off all oxygen for 5 days before discharging her. In addition, her skin remains a light pink, except for the harsh rash on her belly... a mystery to everyone. We're trying to deduce what could be causing it, as I've been using new dressings, latex gloves to apply her steroid lotion, or it could be an allergy to the coverings on her central lines... there are many other ideas floating out there as well, so hopefully, we'll figure it out before it gets too bad.
John is arriving tomorrow...with TJ! Hooray! I am so thrilled- it will be so great to be together as a family again. I am looking forward a special birthday party with my little guy. (Like he needs is one more birthday cake... He has had the longest running birthday celebration of anyone I know... but I'm so happy for him- he deserves it!)
Thank you all for your unnending love and support. Things are looking up here! Enjoy your weekend!
Jenny
Thursday, May 03, 2001 at 07:52 PM (CDT)
Day +42
Hello, all!
Thanks for checking in on Molly. She continues to make good progress, and the doctors are pleased. (Her counts were at 31 yesterday!) Still no news on an exact discharge date, but no one wants to rush it.
She is slowly weaning herself from oxygen, and her skin has maintained its pink color, but has not worsened.
Her demeanor is very happy (except when she feels sick to her stomach). It's amazing to see her so upbeat! The nurses have been flocking her door to see her smile, and I think she's realizing how to show off for an audience! Hee hee! They've added some new meds to help with her reflux and tummy aches, and so far, they're seeming to work!
Allison came over tonight, while I drove Grandpa B. back to the apartment. When I returned, Molly was giggling and playing peek-a-boo, just having a ball! I am so glad to have my baby back... and then some!
Grandma and Grandpa B. are heading back home, and John arrives on Sunday. I can't wait for him to see the difference in Molly. He will be astonished and so happy, I know. Thank you to the Birminghams for all of their love and support. Molly misses their silliness...they are very special to us!
TJ had a wonderful 4th birthday, thanks to John and very special friends and family back home. What an outpouring for such a little guy. He was absolutely thrilled with the fuss over him, and had a really great day. That makes my heart happy.
So I'll sign off today with a smile... Your support and interest in Molly continue to amaze me... thank you and God bless you!
Tuesday, May 01, 2001 at 10:00 PM (CDT)
Day +39, May 1st
April showers DO bring May flowers! Only good news to report from room 5204 today... Molly is handling the reduction of her pain meds well (no more continuous IV), and is showing signs of her silly old self again! It is such a miracle to see her dance, patty cake, wave, do her "so bigs", and babble. I love it! I love it! I love it! (Picture me kicking my leg up like the character in Saturday Night Live... hee hee!)
Molly tested negative for RSV... for a third time! Woo hoo! The docs discontinued her tent treatments as a result, and she is scheduled to have a final chest x-ray tomorrow to confirm her lung status. Lots of ribavirin "baggage" (machines, blending aparatus, tents, etc. etc. etc.)were removed from our room today, so we have lots of space again! I am overwhelmed with how she handled the virus under these circumstances, and so confident in the doctors who take care of her!
Otherwise, the status of her breathing, eating, and moving remain the same. We're taking one step at a time, and will continue to do so for awhile, I know.
Happy Birthday to my little man, TJ, who is 4 years old this week! Please say an extra prayer for him, he is such a blessing to our family, and is handling everything like a champ. I am so proud of him and I miss him sooo much!
Thank you for all of your prayers. They are so powerful, and have had such an impact on Molly's positive progress. A big thank you goes to our new friend, Carol Blalock, who stopped by to visit Molly (all the way from Chicago). Also, big thank you's to all the family and friends at home who are helping us with TJ while Carolyn is on vacation. We are so grateful for everyone's continued support!Lots of love,
Jenny
Sunday, April 29, 2001 at 09:11 PM (CDT)
Day +37
Hello, all!
This weekend has brought about some changes in Molly... the best being that she found her smile!!!!!!! I am so happy, it makes me jump around the room like a crazy person every time she grins at me... It is wonderful to have that special part of our old Molly back.
Molly has also weaned herself from oxygen for most of the time! Her lungs are starting to hold their own. She needs her blow-by air every now and then... a step in the right direction!
Her skin, on the other hand, has worsened over the weekend. She looks like she has a really bad sunburn. Her skin is sensitive to the touch, so diaper changes, dressing changes, baths, and lotion applications have taken on a whole new meaning. Unfortunately, Mol's skin started to break down and peel away under the adhesive of her central line dressing a few days ago, so the nurses and I have been trying creative and soothing options for her daily dressing change. It's no fun to hear Molly scream about this. She tries so hard to be patient, but I can tell it really hurts. (I'm actually glad to hear her tell us about it, because she's starting to use her vocal chords, but I hate to see her in pain. Imagine pulling a 5 x 7 bandaid off your chest everyday! Yeowch!) They say the red rashiness could be the onset of graft vs. host, and the peeling, unfortunately, just happens. Hopefully, both will be short-lived.
Tonight, Allison came over to play with Molly while I went to dinner with Gramma and Grampa. We went to a lovely restaurant, and had a great dinner with lots of laughs- just the break I needed. I am so grateful!
To all of Molly's friends, thank you, too. Not a day goes by that I don't count each and every one of you as a blessing in our lives. Your interest and compassion for what we are going through keeps us strong. In your prayers for Molly, please add a special intention for our little 7month-old neighbor, Melanie, who was moved to the pediatric ICU a week ago. We assumed her trip there would be quick, but she's still fighting like a trooper on a ventilator. We miss her here on the ward, and we want her to feel better!
Sending lots of love and big smiles from Miss Molly!
Friday, April 27, 2001 at 10:41 PM (CDT)
Day +35
Hello, all!
Mol had another good day today. They are slowly decreasing her meds, in order to prepare for her trip home to the apartment! We haven't been told an actual date yet, but we're hoping it will happen sometime in the next two weeks.
Molly still has a few bumps to smooth before she can go home. She remains on her oxygen cannula in order to keep her saturations where they should be. The tummy troubles she was having are improving a little, but she still experienced some vomitting today. Her left side continues to gain strength, but I know she will have physical therapy once we're at the apartment, so that will be an ongoing goal.
Amidst all these things, Molly looks great. Her chest x-ray shows improvement. Her coloring is good, and she hasn't lost any weight, that's for sure. She continues to enjoy the attention she gets from clapping and waving, and I even got a tiny little giggle out of her tonight! (I'm a little embarrassed to admit this, but I'm so desperate for a smile, I went deep into my bag of tricks and pulled out one of my kids' favorites... the "bok, bok, bok" chicken impression... and thankfully, Molly reacted.)
Upon the advice of the occupational therapist, I poured a jar of baby carrots all over her high chair tray, so she could smoosh her fingers around in them to sense their texture. Molly was not too interested, but did manage to pick up the spoon that had just a teeny tiny bit of carrot on it, and brought it to her mouth, which was great! She seemed to like the taste (if she could taste it), and repeated bringing the spoon to her mouth, even when all the carrots were licked off. So that's a skill she hasn't lost, which made me happy. (I wish I could've fed her that whole jar, as I know she would gobble them in a heartbeat, but her tummy's just not ready yet.)
Molly had fun visits today from Gramma, Allison, Allison's twin sister Amanda, who works here at Duke, and Dr. Kurtzberg. She automatically pat-a cakes for Gramma, like it's their "thing" to do... it's so cute! When Gramma got up to leave, Molly searched for her all around the room to show her one last wave and clap- she definitely knows where to go for the "real" kudos! (Gramma always has plenty of those to give! She throws her hands in the air, waves her arms around, and screams "Yeah!" It's pretty funny.)
Molly's counts went down 12.2 today, mostly because they started reducing her GCSF, (a hormone given to help boost the white cell growth.) They continue giving this hormone for quite awhile, weaning her off of it in the next year, once her body takes over complete production of the cells. (12.2 is still great, though, considering she came in with a count of around 10. Normal range is 4-10, so we should expect her to teeter somewhere in that range without worrying.)
Everything is heading in the right direction. Molly is slowly becoming herself again, although she is still very sleepy. Her body, brain, and lungs are working so hard to recover from what she's been through, she deserves a big clap! Yeah, Molly!
All of her faithful friends and followers deserve a big clap, too! Thank you for sharing in this experience with us, by reading these updates, praying for Molly, and sharing all your nice notes and words of encouragement. We couldn't do it without you!
Good night and have a good weekend!
P.S. No cracking fun at me and my chicken impression in the guestbook!!!!
Thursday, April 26, 2001 at 08:12 PM (CDT)
Day +34
Well, all I can say is Miss Molly is crankin' out those cells... Today, I woke up to a lab report which said her white cells were at 16.2, and I was just handed another one this evening that read 18.1!Wow. I am so impressed with her!
Molly continues to tolerate reduced pain meds and was awake for longer periods today. She made it to the floor (I created a mat with about 6 blankets on the ground), to clap, wave, hold her toys, and even squeak in a few "so bigs" for kicks.
Her lungs continue to sound the same or better each day. Today, she tolerated 4 oz. of Pedialyte, another step in the right direction!
She is a little punkin. I am so happy for her strides and her continued progress.
Yeah, Mol!
Thank you for praying for Molly's continued health and hopeful return home. We appreciate all your good thoughts for her, and we love you!
Wednesday, April 25, 2001 at 08:50 PM (CDT)
Day +33
I woke up this morning to see that Molly's cells went from 5.9 to 10.2- wow! You go, girl! Grow those cells! Grow those cells!
On other fronts, Molly has been working really hard at physical therapy... her left side is coming around, I think. She had nothing to eat today besides a tablespoon of water. She continues to dry heave at least once a day, so we thought it best to not feed her much. I'll try feeding her an ounce or two of Pedialyte tomorrow, and see how she reacts. The docs suggested doing a swallow test if she continues to vomit. (I'll give more details on that as she progresses.)
She has been a bit more alert every day. She will wave and clap a little more often, especially in the morning when she's really awake. They are decreasing her pain meds daily so that she will not go through withdrawal... and she seems to be handling it fine.
Otherwise, she still needs a bit of oxygen, and she sleeps a lot... in and out of the tent. However, she's coughing much less, and her color is great!
Thank you all for your continued interest in Molly's progress. Everyone here is pleased with how she is doing, and we plan to figure out these few last "bumps" in the road before we get to go home to the apartment, sometime in the next few weeks. Your continued prayers for her mean the world to us. Good night!
Monday, April 23, 2001 at 12:35 PM (CDT)
Day +31
One month post-transplant! Molly's cells grew from 3.9 to 4.5! She had a very good physical therapy session this morning, before her nap in the tent.
We watched her home video of her prior to transplant, and I miss her smile and giggle... it was so good to see it again, and I think it was good for Mol to see herself (and see John and TJ, too!).
We tried the pedialyte today, but it didn't stay down for too long. I feel so bad, because Molly seems so famished as she's drinking it, but then it just upsets her stomach. I hate to see her getting sick again. She's had enough of that. So, I guess we'll just give her more time.
She's doing really well, otherwise. The nurses continue to be amazed at her pleasant disposition, no matter what she's going through. I am proud of her.
Thanks to everyone for your kind thoughts to me yesterday. Your encouraging words helped carry me through a rough day. We love you!
Sunday, April 22, 2001 at 05:52 PM (CDT)
Hi from Room 5204.
Today was emotionally draining, as Raven finally passed away this afternoon. My heart is so sad for her parents, I can hardly stand it. They are so young, and were faced with such a hard decision... and now their sweet baby girl is gone.
Raven and Molly were often mistaken for each other prior to their transplants. They both shared that super Hurler smiley face, and Raven had a personality that wouldn't stop. It's just been a reality check for me... knowing they were admitted one week apart from each other- to see Raven's health decline so quickly seems unfair. Please keep her family in your prayers.
Thank you to Gramma and Grampa B. for coming over this afternoon. I was able to go to the Duke gardens and chill out for awhile. It was a beautiful day, and I felt much better when I returned.
On the Molly front, she made a complete liar out of her mother in front of all the docs today- what a bugger! She is using her left hand much more than last night, and was sitting up just as cute as a button, leaning to the left every now and then. I'm still glad we got the CT scan, though. Hopefully, last night was just a random thing, and a little more physical therapy will help Molly regain her strength. As for the vomitting, we're going back to Pedialyte for a few days to give Molly's tummy a rest.
Dr. Kurtzberg echoed the thoughts of all the docs here, saying she thought Molly looked stronger than she did last week. So, for the moment, we will just work on that left side, and continue to watch Molly get better.
Thank you for reading all three of my updates today... sorry to be so long-winded. I'll take a break for a few days unless something major occurs.
Love to you all!
Sunday, April 22, 2001 at 12:03 PM (CDT)
For those of you who read the journal entry I wrote about an hour ago, there was some misinformation about Raven. A nurse just came in and told me she may have just been taken off life support, but that she is still alive. I feel better about it, but I know what is looming in the future for her is not comforting. I just didn't want to pass on information that was not true. Please pray for her and her parents during this stressful, scary time.
Thank you.
Sunday, April 22, 2001 at 09:57 AM (CDT)
Day +30
We had a busy night last night. Molly took her first "field trip" off the BMT ward. We went with our nurse and the fellow on duty last night to get her a CT scan of her head. I was a nervous wreck taking her out of the hepa filtered environment, but she had a mask on and we draped her under a sheet.
The reason for the CT scan, was that Molly started slumping to her left side a lot yesterday. When she was sitting up playing, she showed a lack of fine motor control in her left hand, and she vomitted twice as well. (We started her back on 2oz.diluted formula, which was a big step. Apparently one Molly's not quite ready for just yet.)
All of these things finally "conked" me over the head at 10 PM last night,and I realized it could all be related to her shunt. So, a CT scan was ordered, and we made the long trek to radiology... the timing was a good thing, because the hospital was empty- we don't need any extra germs hurting Miss Mol! But getting her there on my lap, in a wheelchair, under a mask and sheet, with her IV pole (which has a mind of its own), and a portable oxygen tank was another story altogether. Whew! Luckily, we were able to laugh about it, but we looked like Barnum and Bailey.
Anyway, I waited quite awhile late last night to hear from a neurosurgeon, and he confirmed that the scan showed no signs of shunt malfunction. After checking with the surgeon who placed the shunt, he reconfirmed it this morning. Whew! (Had there been a problem, we would've been on our way to the OR... not a good place for a child with 3900 white cells and minimal platelets.) God continues to watch over our Molly.
What the cause of her slumping and lack of movement on her left side remains to be seen. She may just need a boost of Physical therapy? I still don't have any answers, but for the time being, she is doing ok.
Unfortunately, we learned this morning that our next door neighbor, Michael, who had leukemia, passed away. We really didn't see much of him while was here, but he gave Molly a Duke bib after we shared some treats with all the kids on the ward. It had a card which read, "Dear Molly, Thank you for the treats. I hope we can enjoy them and play together when we are both better. Love, Michael." Although he is no longer with us, he is out of pain now. Our hearts go out to his family, who has seen him through his battle with grace and strength.
Further unfortunate news followed as I learned that Raven, the other Hurler baby on the ward, passed away this morning. She was one month older than Molly, and came here precious and full of life, with a smile that could melt your heart. She had some respiratory complications post-transplant which put her in the Pediatric ICU just a few days ago. I am so sad for her parents, whom I know and have spoken to on occasion here. I can't imagine the grief they are experiencing, because this all happened really quickly. Raven was their only child, and is truly an angel.
My heart is full, and the smiles are few around here. Please keep these two families in your prayers today, as well as all the staff here, who gets hit very hard by such devastating news.
Tomorrow is a new day, and we have many angels watching over Molly. I continue to count all the blessings we have seen in her, and thank God for all He has given to our family. Thank you, too, for thinking of us.
Friday, April 20, 2001 at 04:54 PM (CDT)
Day +27
Wow. Another amazing day for Miss Molly! Her white cell counts are up to 3.7 and we got incredible news late yesterday (the best birthday gift we could imagine): Molly is 100% engrafted! Which means, to you and me, that up until now we did not know if the cells she was growing were the donor's or her own returning again. This news confirmed that every last cell growing is from the donor!!!!! Yeah, Mol!
Although they are 100%, they are still "baby cells" and not anywhere near the number or strength Molly needs to fight off any infection. So continue your chants, "grow, cells, grow!"... We're continuing to take one day at a time.
Thanks so much for your support and love.
We're smiling in Durham!
Thursday, April 19, 2001 at 01:06 PM (CDT)
Day +26
Happy Birthday, little Miss Moo Moo! Molly had another big day today... her counts went up to 2.8!!!!! Earlier this morning, they had dropped to 1.4, but then doubled to 2.8 by 10AM!
She is doing well, sitting up in the high chair a little bit, and doing her best to stay awake. She looks really good. She seems to need the pain meds, but if they make her feel better, I don't mind giving them to her.
It's so incredibe to go over her first year in my mind. The two of us went through a lot in the first few months of her life, but she has surpassed me by far in the courage and determination categories. I can't believe she won't remember an ounce of what she's been through! (Although I am glad, too, cuz she doesn't need to remember all the yucky stuff she's endured.)
Molly is such a blessing. She has changed our lives for the better, and continues to impress us everyday. Her strength and resiliance is immeasurable,even at such a young age.
Your friendship and prayers are really helping boost her endurance to get through this battle. I can't say thank you enough. I let her know every night how lucky she is to have so many friends and fans...Enjoy today, and make a special wish for our little birthday girl!
Happy Birthday, dear Molly, Happy Birthday to you!
Wednesday, April 18, 2001 at 12:42 PM (CDT)
Day +25
Wow... I can't believe it has been 25 days since Molly's transplant. She is sleeping lots and continuing on the pain meds. I'm not surprised, though, because she has been working very hard to grow more cells! Since the last update, her counts have gone from 1.0...1.9...2.7!!!!! Needless to say, I am overjoyed. She looks really good- the "glow" (suntan) from chemo makes her little blonde "fuzz" pop right off the top of her head, and the skin rash in under control as well.
More good news... Molly got her second "negative" result for RSV today! She is coughing less and less, and her lungs are working hard to repair themselves from the workout that 'ol bug gave them.
She will continue her meds in the tent, just to be safe, but it's so good to know that the treatment is effective. (Don't expect Molly to be a big "camping" fan in her lifetime, though.)
Now, we just have to work on finding that smile... and hopefully her da da da's will come back for good, too. And once they come back, the pat-a-cake and her famous "so big" will be sure to follow suit, I just know it. She is such an angel! It's amazing to watch her battle this with such strength!
Thank you all, so much, for continuing to pray for Molly, and for caring enough to take a break in your day to read up on her progress. You are really making a difference in our lives, and we are so grateful!
Tune in for more fun and cell growing tomorrow (hopefully)... on Molly's 1st birthday!!!!
Monday, April 16, 2001 at 09:09 PM (CDT)
Day + 24
Hi, everyone!
Today was a pretty good day. Molly's white counts went up to 1.0 from 0.6, which was super news! She seems to be getting a handle on the RSV little by little, and she sleeps well under her tent sessions with the Ribavirin.
Julie went home today- we were sad to see her leave, she added such an uplifting spirit to our situation. (I haven't laughed that hard in a LONG time...)
Grandma and Grandpa B. are staying at the apartment, and in and out of our room visiting. Molly played a little patty-cake with Gram this afternoon!
I hope all of you are doing well. We continue to be amazed by your dedication to Molly's progress, and we are really grateful for your prayers. We love you!
.Sunday April 15, 2001 10:30 pm (EST)
Day +23
Happy Easter Everyone! This is a guest speaker today...Aunt Julie! We had a very nice Easter here in Durham, especially with Molly and her bunny ears!! She was a big hit, I have to say! Well, I know from all of you who read this site as religiously as I do, it is hard to imagine Miss Molly here at Duke! I can tell you first hand that she is just as much of an angel as she ever was! I can not believe how big she has gotten! I truly was astounded! And she could sit up by herself, which I had not seen. So she is making physical strides that we do not think about day to day. Even though, her smile has not come back, she has given the occasional wave, shake of her Coke can, or even today, she was sick of listening to Jenny and I talk, so she jumped right in with some "da da da". I had the pleasure of holding her and believe me, it was the highlight thus far. Watching her sleep and knowing that she is fighting so hard brought tears to my eyes. Also, her mom is really hanging in there. The quarters here are small but with Jen's creativity, it is very cute! Jen deserves a huge round of applause for being a wonderful person, outstanding mom and phenomenal support for Miss Molly!
As for her disposition, she has lightened up a bit but is still extremely tired. She sat up and played for a while today. Her counts went up to 0.6 today (yep, yesterday's 1.4 was probably an error). That is still up from 0.5, so we are pleased. Her color is looking good. The doctors seem to be pleased with the way she is progressing.
Well, I am off to Chicago tomorrow, but it is going to be really hard leaving. I do not know, however, if I will ever be allowed back, as I caused a bit of commotion in Room 5204 from having Jenny and I dancing with surgical masks on our heads to laughing so hard we were bawling crying at fond memeories of our idiotic college days. But all in all, my time here has been terrific spending time with Jen and Mol! I have loved every minute of it!!!!
I am handing off the company responsibilities to Grandma and Grandpa B. I am sure they will take good care of both the ladies!
Take care and keep those prayers pouring to God for Miss Molly! Thank you!
Love,
Julie
Saturday, April 14, 2001 at 09:25 PM (CDT)
Day 21
Hi, all!
Sorry we missed a day of updating... Molly is continuing on her up and down days... yesterday was a down day... she slept the entire day. She was really pale, lethargic, and cranky every time she woke up or was stirred at all. She was not a happy camper. Her counts, however, went up to .5, or 500!
Today, Molly got hemoglobin and platelet transfusions, and they reduced her schedule for the ribavirin in the tent- She now gets the treatment for only 2 hours during the day, and for 6 hours during the night.... MUCH nicer. After getting the blood, Molly's color was much better, she actually got really rosie cheeks, and looked great... then I noticed the little red dots all over her arms and hands, and realized she was getting a rash from the "rush" of new cells coming in... her counts went up to 1.4, or 1400, today!!!!!!!!! I couldn't believe it...She continued to show signs of pain all day (She has introduced us to her newest "screech-cough" it looks painful, but sounds even worse.) Although she was hurting, was able to sit up with her bunny ears on and entertain anyone that came into the room. She wears them well with her little bald head. If nothing else, it totally made me smile- all day long.
Grandma and Grandpa Birmingham arrived this afternoon. Grandma B. got to hold Molly for a few hours this evening, while Grandpa and Julie went to dinner. Molly hasn't seen her grandma in over 2 months... It was a nice reunion. Pop Pop plans to hit the scene with a hat and his glasses tomorrow. And I'm sure I'll end up with the bunny ears on at some point. Watch out!
I hope everyone has a happy and peace-filled Easter. Thank you for your special prayers and intentions for Molly. God bless you.
Thursday, April 12, 2001 at 10:10 PM (CDT)
Day +19
Hi, all!
The "blahs" continued today... Molly is really working harder to breathe- she had a few minor episodes that are showing the effects of the RSV (and the medication) on her lungs. Dr. Kurtzberg came in to see Molly today, and explained that her lungs sound clear, they are just getting tired in a few areas. Thus, Molly needs extra oxygen during these "episodes", where she can't stop coughing and get all the oxygen she needs in her lungs. Otherwise, she breathes fine, and lies comfortably in bed (or under the tent). In Dr. K's words, "All Mol has to do is hold her own, and she'll come through this ok."
On another note, Molly has successfully regained the knowledge and love for her bottle!!!!! This was a very big deal to us, as we weren't sure she would be able to transition back to the way she ate prior to transplant. We were told that some babies have an aversion to the bottle after getting a lot of meds orally, not to mention the effect the chemo has on their taste buds and throat. But not Miss Molly! She dove right for that bottle with her mouth wide open and chugged the whole thing down! I was so happy. (I think the whole coke can exercise was her way of telling us she wanted her bottle back...)
Aunt Julie got here safely, and is a joy to have around. She is such a good sport about watching Molly go through her day-to-day medical activities that I have now taken for granted. She is a super companion to both of us.
God bless you all! Thank you for your continued prayers for Molly. We know they are being heard. Sending lots of love,
Jenny
Wednesday, April 11, 2001 at 01:17 PM (CDT)
Day +18
Hi, all...
Not too much to report here. Molly is very "blah"- a bit whiney, achey, and just lethargic... hopefully, her cells are really coming in and getting the best of her today. The docs say her demeanor is to be expected. Her white counts stayed at .4 again, and she tried to hold the cold coke can this morning, but actually almost cried with frustration after she dropped it a few times. I KNOW my Molly's not feeling good when a coke can upsets her! And she has every right to express herself. She is just "poopy", as they call it here.
She did ok in the tent overnight, which I was pleased about. And I did ok wearing my big 'ol green mask the entire night, too. Add that to my usual AM "bird's nest"...I was quite a sight first thing this morning!
(Come to think of it, maybe that's what made Molly cry! Hee hee!)
Allison, Molly's best buddy, came over this morning for a visit. She is so good to us! Aunt Julie will be here to spread her cheery smile around our room tonight! We can't wait to see her!
Thank you all for your prayers for Molly. God really is listening! Molly is blessed to have such a following of faithful friends... We love you all!
April 10, 2001
Day +17
Hi, all!
Even though it is only 3PM, Molly has had a really good day today! She maintained her cell count of .4, she was sitting up and maintaining good sats without any extra oxygen, and the occupational therapist had a great session with her, too. She was trying to get Molly to bring something to her mouth, and after a bunch of tries, I picked a coke can out of the fridge and it did the trick! Molly brought that cold can up to her mouth at least 10 times, using both hands! This was all very exciting to see... she was breathing well, working hard, using both hands, picking something up, and using her mouth to goober all over it!!!! (Sounds like little things, but they are huge steps for a baby in this situation!)
Molly continued with her Ribavirin and Albuterol treatments throughout the night, and her lungs sound good today. She got another respiratory/viral battery this afternoon to see if the RSV is still positive, but they will continue with the tent treatments regardless of the outcome, just to be safe. (We switched the timing of the tent, because I couldn't take seeing her in there awake for 6 hours... Now Molly gets treatments for 4 hours during the day, and throughout the whole night. Hopefully, she'll sleep through both sessions... at least that was what I had in mind. We'll see.)
I am looking forward to Aunt Julie's visit tomorrow night, and Allison is coming over today to stay with Molly for a bit.
Everyone here continues to be wonderful to us. Volunteers, doctors, nurses, therapists, you name it! (A special thank you to our new friend, Joan, who works as a Rock-A-Baby volunteer, and part-time chauffeur for me.)Molly is being very well-cared for. One of these days, she'll get her patented smile back for good and really knock their socks off again!
Thank you for your prayers... Today is a result of all your good thoughts! I hope you are smiling as much as I am!
Monday, April 09, 2001 at 04:17 PM (CDT)
Day +16
Hello, Molly fans...
Things here are moving along... Molly's white cell count went up a bit since our last update- 0.4...hooray!I'm not sure if she ever lost all her hair, because she has about 1/4 inch of blonde fuzz all over her head! The jury is still out as to whether she'll lose this completely or not, but it's really cute! She is truly a "peach".
Unfortunately, as her white cells come in, they are going to try to "go to battle" with her lungs, which will weaken her respiratory status. We've seen a bit of this already, as her oxygen saturations are dropping more readily. Her lungs also had a bit of a reaction to the Ribavirin, so they changed her protocol to 6 hours of the meds under the tent, twice a day. What a bummer. Poor Mol endures the time pretty well, but it gets warm, dry, and quite boring being on her tummy engulfed by plastic for that long. The good news is that her congestion is lessening in her nose, and her lungs still sound clear. The chest x-ray taken today showed some slight cloudiness, which is a sign that the new white cells are trying to "put up camp" there. (I find it interesting that the "much anticipated" white cells are causing more havoc than help right now... but they are just not enough in number to make an improvement.)
On a better note, Molly's mucousitis seems to be on it's way out. When she doesn't have a fever (they are becoming more common than not with her new cells coming in), she is up playing, and talking. What a nice sight to see!
John flew home today to be with TJ, who was staying with Gramma and Pop Pop B. Julie is on her way here this week!
Your continued prayers mean the world to us. Thank you for thinking of Molly, and for checking her site so often. We love you!
Saturday, April 07, 2001 at 08:02 PM (CDT)
Day +14
Hello, all! It was a beautiful day here in Durham. Spring has sprung, and John surprised Molly and me this afternoon with a quick weekend visit!
No more new cells to report today, which is okay. They tell us her counts will bounce around a lot in the beginning, but to be assured that she is working to grow more.
Today, Molly started to experience a few more fevers. While this is to be expected during this time of growing cells, it also poses the question as to what exactly is causing them. There is a myriad of choices to answer this, so she gets some Tylenol, and we wait for the fever to work itself out. (At least that's our experience so far... we are certain that if she ran a fever for too long, they would change her meds to help rectify the situation.) She also continues to have difficulty breathing when she's not lying on her tummy, but she is getting some oxygen to help her, and her lungs remain clear, which is encouraging.
Thank you for all of your nice notes and good thoughts for Molly. We are still taking one day at a time, and finding the goodness in each. We love you, and hope you are enjoying the Spring weather, too!
Friday, April 06, 2001 at 10:14 AM (CDT)
Day +13
Imagine being in the first car of a roller coaster. After chugging up a large hill, you're just hanging over the peak... ready to plunge with excitement down the next slope...That feeling in your stomach is how I felt this morning when I woke up to two nurses saying,
"Molly grew cells!"
I was so pleased (and surprised!) to know that those little buggers are dividing and doing what they are supposed to do! More importantly, I am so proud of Molly for laboring through everything she has to "give birth" to each and every one of them (around 300 so far).
So, today, things look good. The RSV is definitely a bother, causing Molly to continue coughing... but honestly, it is overshadowed by positive results of her new cells. She is such a trooper as she lies under a tent in her bed to receive inhalant treatments. After 2 hours of it, she puts her little palm up against the side like, "can I please get out now? I've had enough!" and I don't blame her. Her lungs continue to sound clear, and hopefully the onset of white cells (albeit not many of them)will help her fight this RSV battle.
A big thank you to Kathy Hayes (and her family) for being here this week. She was our lucky charm and a huge help... and we so enjoyed her company.
Today is a day that I hope you feel the power of your prayers. We certainly feel them working, and we so appreciate every one of them.
Keep growing, cells, keep growing!!!
Wednesday, April 04, 2001 at 08:48 PM (CDT)
Day +11
Sorry for the delay in updating the site, but we had a bit of a setback yesterday. We wanted to regain our footing before sharing the information with anyone.
Molly tested positive for RSV yesterday. Unfortunately, despite 2 negative test results, some of the cells from her prior bout with RSV may have still been hanging around, waiting to make their debut. We were a bit taken aback by the news, to say the least. This is not something we had hoped would happen to Molly, as she currently has no immune system to fight off infections. The good news is that at this point, her lungs show no signs of damage. Her congestion is mostly in her nose and upper airway. So, in order to help her fight this... and hopefully keep her lungs dry, she is receiving inhalant treatments of Ribavirin and Respigam antibodies, as well.
Her lab results continue to come back looking good- her organs are performing well, even under the stress of all the medication. She is getting transfusions of platelets and hemoglobin as needed, and continues to improve with her cough. She has been free of fevers for an entire night and day, and surprised us today with sitting up for an extended time: waving, dancing, watching Elmo, and even having a heated "da da" discussion with Kathy! (This is the first time she's spoken in awhile, so I told Kathy she is not allowed to go home. She definitely has the magic touch! We are so glad she is here with us!) Molly's da-da's make me think her throat must be healing from the mucousitis... I was elated to hear her voice again.
So, even in the face of her biggest challenge yet, Molly continues to amaze us. Dr. Kurtzberg believes RSV may delay her engraftment, but will not prevent it, which was encouraging. Despite Molly's good day today, we are still very concerned about the future, and will continue to take one day at a time. She is a fighter, and with your prayers, we hope she will beat this!
Love to all, and goodnight!
Monday, April 02, 2001 at 05:30 PM (CDT)
Hello, all, and Happy April!
After a much needed visit with TJ, I am "back in the saddle" in room 5204, feeling quite rejuvinated!
Molly is not sharing my enthusiasm, however, as she is still pretty tuckered out from all her body has been through. She has been getting a bit of oxygen at her bedside for a few days, as her mucousitis was causing swelling in her airways. The oxygen has helped, as did being on her belly, but her oxygen saturations would fall out of the normal range each time we moved her, and the coughing became inncessant. So, they gave her an inhalant treatment of Albuterol, which really helped open her bronchials, and has made a big difference in her breathing! Yeah! She is coughing much less, and was able to sit up on her own today with little help from the blow-by oxygen. In addition, they lowered her pain meds, and she seems to be handling it fine.
Last night, she spiked a pretty high fever,possibly due to the blood infection she has. (We found this out on Sunday.) She is being treated with antibiotics for the infection, and the fever was probably just a sign of her body trying to work the medication and fight the bacteria. (I'm finding that fevers are very common on this ward, and rarely will it be easy to discern what is causing them, but that they are to be expected.)
Today, Molly was much better. Her fever was gone, and as I mentioned earlier, the improved breathing gave way to good Physical and Occupational Therapy sessions.
She is working so hard at fighting, it is difficult for her to smile these days, but if I raise her arm, she'll move her fingers to wave. (I keep telling her she lost her smile somewhere in her bed, and we have to find it!)
On other fronts, John and TJ made it home safely. I know it was really hard for me to say goodbye to TJ, but even harder for John to say goodbye to Molly. (If you are reading this on April 3rd, please send John a birthday message to his work email: johnbirmingham@discoverfinancial.com. I think extra birthday wishes will cheer him up!) He did a fantastic job of taking care of her while he was here, and she misses her daddy.
Tuesday evening, Kathy Hayes is arriving to visit with us for the remainder of the week. She put everything in her life on hold at the drop of a hat, to come and keep me company while I'm here alone. Thanks, Kathy (and Brian, too)! You are awesome friends. Molly and I can't wait for you to get here!
I probably don't need to tell you that this place is all crazy about tonight's big game. Go, Blue Devils! (Most of you who know me realize that sports are quite out of my realm of interests, so that took a lot for me to even KNOW to say the above...)
Thank you for your love, prayers and encouragement. You are pulling us through this more than you'd know! We love you!
Sunday, April 01, 2001 at 11:58 AM (CDT)
Day +9
John and Molly here on a rainy Sunday morning in Durham. Molly did pretty well last night. She continues to fight a bad cough that is the result of the mucositis. For the most part, Molly has been resting on her stomach for most of the past few days...this is the easiest on her breathing and apparently the most comfortable. They have again "upped" her pain medication to help her feel better. All in all, things could be worse and according to the doctors...although it is tough to see Molly this way it is not at all unusual given that she is in the "dog days" of mucositis (roughly Day 6/7 to Day 14/15). We are looking forward to her feeling more like her self soon and are hoping that by next weekend we might start having a sense of how the transplant is grafting and how her cell counts are coming in.
Tommorow TJ and I head back home. Jenny and Molly are going to have a stretch here by themselves so please keep your fingers crossed that they have a quiet, uneventful and restful (at least somewhat restful) time. The doctors and nurses here are great and will be keeping an extra eye on them for TJ and I.
As always, thank you for the thoughts, prayers and encouragement.
Friday, March 30, 2001 at 07:50 PM (CST)
Day +7
Wow! One whole week post-transplant, and we've made it! Molly continues to be a trooper...
Today marked her officially "bald", as I finally took the "buzzer" to her little, round head. (You couldn't have paid me money to make me believe I'd EVER do that to my little girl, but I was very brave.)Her hair was falling out pretty readily, so we just got the last of the "wispies" that were left. Of course, this being her first "official" haircut, I took some pictures, which I promise to put up on the site as soon as they get developed.
On another front, Molly had a really good physical therapy appointment today. Dawn, the therapist, was awesome with her, sang songs to her, and even helped with a vomitting spell... and she gave John some great information for helping Molly maintain her strength and keep her muscles active.
TJ and I have had a wonderful visit- his positive energy and non-stop momentum gave rise to lots of tickling, laughing, goofiness, and many, many hugs. He is such a silly little guy...he tells a mean knock-knock joke, and knows exactly what to say to melt my heart. He was a big help in throwing his dad a "surprise" for his birthday next week- he helped shop for the gifts, made and decorated a cake, provided party favors, AND did his best to keep it all a big "secret" (which is easier said than done!) This visit was EXACTLY what we needed. Thanks again to Grandpa B. and to John, for letting us have so much time together. (As I walked TJ and John out of the ward tonight, a doctor gave John a hard time saying, "one of the Birminghams has definitely been on sleep patrol for a few nights!" His bed head and droopy eyes were blatant giveaways, poor guy.)
One last thing before I sign off... I feel really uncomfortable addressing this, but a lot of you have asked where to send packages to Molly. If you wish to, you can send them to the hospital, just address them with Molly's name and our room #5204- boldly. (However, to keep the environment as bacteria-free as possible, the rules don't allow us to have plants, flowers, non-mylar balloons, or food in the room.)It is extremely thoughtful, but not necessary. Your prayers are the most precious gift you can give, in all honesty.
To those of you who have "beat me to the punch" of what I just mentioned, THANK YOU, THANK YOU, THANK YOU! Your parcels have brought us lots of smiles, and have perked up Molly's room and wardrobe.
Thank you all, so much, for your continued interest in Molly and our family.
Lots of love,
Jenny
Thursday, March 29, 2001 at 07:21 PM (CST)
Day +6
This will be rather quick...Dad and Molly need to catch up on some sleep tonight.
Today was quite similar to our previous couple of days. Molly's still pretty lethargic fighting off the pain and getting sick every couple of hours. Her hair is virutally all gone in the back and going quickly in the front.
TJ and Jenny had a fun day back at the apartment; baked cookies, watched videos and read books. This evening they came over to the hospital to have dinner and visit Molly for a very quick hello. TJ got garbed up in the yellows (he thought the rubber gloves were cool). Upon entering the room, Molly perked up and leaned over the crib with as much energy she had to get a peak at her brother. TJ was most interested in all of the "machines" and wanting to see where Mom and Dad slept in the room (pull down bed was impressive to him). Jenny, TJ and I snuck down to the cafeteria for dinner while Molly's "best" Best Buddy, Allison, kept her company and managed to get some smiles out of her.
It looks as though tomorrow Jenny and I are going to switch roles for the day.
Take care...
Wednesday, March 28, 2001 at 11:01 PM (CST)
Day +5
Molly is continuing to deal with some pretty tough pain. Dr. Kurtzberg increased her amount of pain medication to help her cope but reassured us that this is the point where it is generally the worst and that the pain should start subsiding soon. On the bigger picture front, Dr. Kurtzberg is very encouraged with Molly's progress and told us that thus far her organs have held up well to the chemotherapy regimen.
From the beauty department...Molly's hair starting falling out at a pretty rapid rate today - large clumps on her pillow. While we will miss Molly's classic morning "bedheads", we are ready for the new look Molly to arrive.
From the TJ and Jenny mental health department...Granpa B brought TJ down today for a visit and some quality bonding with Mom. For the next couple of days, Jenny and TJ will be on Mom/Son retreat back at the apartment watching videos, eating popcorn and probably whatever else TJ's little heart desires. Should be good for both of them.
The other news as a result of this visit was that Grandpa B got to see Molly today. Despite Grandpa having to get garbed up in the "yellows" (mask, smock etc), Molly immediately recognized the glasses and his patented Donald Duck imitation he does especially for he - brought a smile to her face.
That's really it. Before signing off, wanting to report that Molly's new pal and next door neighbor here at Duke, four month old Melanie, is doing much better after a tough couple of days. We are hoping that Mel's mom, Robyn, will be able to catch up on some needed sleep after a couple of long nights.
Have a good day.
Tuesday, March 27, 2001 at 07:30 PM (CST)
Day +4
Hello, all...
After 2 nights of good sleep at the apartment, tonight's author is well-rested and ready for anything! (Thank you, John!)
Not too much to report today from Room 5204. Molly had a restful day of sleep, especially with all the meds she is getting now. She had her second transfusion of platelets, which was to be expected, as well as additional protein and her normal Tuesday infusion of Respigam. I finally had to write down the 12+ meds she is taking, as they all started sound alike and have at least 13 letters each- Yikes! (Now I feel like I know what the nurses are talking about now when they come in to give her medication.)
She continues to battle the vomitting and diarreah, but hopefully, it is slowing down, and coming to an end soon.
Her nurses are awesome- one even came in to visit her on his day off! Amazing.
Dr. Kurtzberg is pleased with how Molly looks, and says things are moving along as expected... No fevers or any uncertain side effects... thank goodness! Somehow, almost magically, Molly musters up a wave for Dr. Kurtzberg each day! She must know she is a very special doctor.
The big news of the week is TJ is flying here with Grandpa B. tomorrow!!!!!! He was really having a tough time at home without his mom and dad, but we've fixed that!
(Thank you, Grandpa B.!) I am so excited, I can't wait to see him! He called tonight, and said, "Hi! Guess who's coming on an airplane with Pop Pop tomorrow to see you?" Before I could even say "who?" I had to hold the phone away because he was screaming, "MEEEEEEE!" That confirmed we made the right decision. He is thrilled.
Our hope is that everything will go smoothly with Molly, so that John and I can "divide and conquer" with both kids.
We may let TJ sneak a quick peek at his baby sister through a window, so he better understands what she is going through so far away from home.
Thank you all for your love and prayers.
God bless you and good night!
Love,
Jenny
Monday, March 26, 2001 at 09:18 PM (CST)
Day +3
Hello again from Durham - John writing tonight while Jenny's catching up on some sleep.
The past two days have seen Molly trying to shake the affects of the chemotherapy she had to undergo prior to tranplant. Nauseau and bad diapers arrive pretty regularly as her body tries to dispel the mucositis that resulted from the chemo. Sunday was Molly's most lethargic day - everything really caught up with her...not wanting to do much of anything.
During Dr. Kurtzberg's daily visit yesterday, she also recognized Molly's rather significant state of "blah". Although she wasn't outwardly showing much pain (crying, wimpering), Dr. Kurtzberg began her on pain medication. She told us that often times kids Molly's ages deal with pain by trying to "tune out" and not move versus crying etc. Knowing how generally upbeat Molly is, Dr. Kurtzberg thought she was coping with pain in this way. Needless to say that this was the right call...today Molly got back to waving and clapping. If only the pain medication would also take care of Molly's poor "toxic avenger" symptoms.
Many people have asked what's next now that the transplant is over. To be honest, the next two weeks we will be mainly just trying to keep Molly as comfortbale as possible and prevent any infections/viruses from setting in since she is immune suppressed and obviously very vunerable. Around Day +17 give or take some days, we will be able to start seeing how her counts (white blood cells, red blood cells)are coming back and, very importantly, how her body is reacting to the transplant...ideally accepting it.
We continue to appreciate all of the concern and support and thank everyone for keeping our spirits up. There is still quite a bit of road ahead of us but we are trying to take each day as it comes (sorry about the cliche'). Molly is a heck of a trooper so we are staying optimistic about light at the end of this rather long tunnel.
Take care.
Monday, March 26, 2001 at 06:17 PM (CST)
Day +3
Molly is doing about as well as can be expected right now. The last two days we have been trying to get her comfortable and fight through the affects of chemotherapy. She has been getting nauseous every few hours trying to work the musocitis out of her system. Also, Sunday she was more lethargic than she had been at any time during our stay. During our daily visit with Dr. Kurtzberg, she brought up that some kids don't show overt signs of pain through crying etc but rather by keeping it all in and "tuning out". Having come to know Molly's cheery disposition, Dr. Kurtzberg felt that this was the case so she began Molly on pain medication to help her feel a little better...so far it does seem to be working. She has been up playing a little more and getting back to her waves and claps.
Thanks for your prayers. If you could also keep TJ in your thoughts over the coming days, we'd appreciate it. As we expected and fully understand, he is starting to have a hard time being separated from Mom and Dad...starting to take it's toll on him. We love you TJ...hang in there.
Saturday, March 24, 2001 at 07:08 PM (CST)
Day +1
This is just a quick update... Nothing too new to report. Outside of a bit of vomitting, Molly had a sleepy day. She is doing well and looking good so far!
I wanted to let you all know that I downloaded some new pictures...hopefully, you'll be able to view them. If not, check back, as sometimes it can take awhile.
Thank you for all of your prayers. All of the cards, emails, packages, and guestbook entries are so thoughtful...I can't tell you how we look forward to receiving them everyday. Molly thanks you.
Those cells are growing... we can feel it!
Saturday, March 24, 2001 at 08:07 AM (CST)
Day +1
The main reason for posting an update this morning is to have the chance to type the header of "+1"...feels good to be on the plus side.
Molly and I had a really good night with not too much excitement. Jenny was catching up on sleep at the apartment after a tough night Thursday.
We watched some of the Kansas/Illinois game and had a pretty restful night's sleep. They began Molly on two new things last night. The first is called TPN and is given through one of her lines. For the next month plus, it will be her source of nutrition (no more bottles). They tell us that once the mucositis arrives that kids really are not up to eating anything. Molly also began a treatment at 1AM that will continue for the coming days. It is an anit-fungal medication to help her body fight off infection while she is immune suppressed.
Other than that, nothing too new to report. Since we are expecting a quiet weekend with hopefully only a few bouts of nausea and "challenging" diapers thrown in to keep us on our toes, we may not update again until Sunday night or Monday. Jenny will be trying to post some new pictures either today or tomorrow...we borrowed a digital camera to take pictures during the transplant yesterday.
Have a great weekend...hope Spring is showing up where you are like it is here in North Carolina.
John, Jenny and Molly
Friday, March 23, 2001 at 11:59 AM (CST)
Day 0 Transplant Day
Hi, everyone! Just wanted to let you know that the transplant went well this morning... Molly received a unit of 72 ml of stem cells, in about a half hour's time. We took lots of pictures, which we are hoping to post on the site- we just need a cable to help us do so. We'll probably write another update tonight, and we'll be sure to let you know when the new pics are available.
Unfortunately, Molly had her first "yucky" night last night, as she experienced a lot of vomitting from the mucositis that's setting in. This is one of the chemo side effects she'll be battling for the next few weeks. (The lining of her entire GI tract is "shedding", and settling in her tummy. Then sores start to appear in her mouth all the way to her bottom. It's no fun at all.) Each child experiences a varying level of the effect, but she will most likely be in a lot of pain from it. They are giving her pain meds as needed. We will also expect her hair to "shed" soon as well.
As I said before, today is filled with promise, but also with pain... It is so hard to see Molly suffer, even though we know it is for the best. Your continued prayers for her are needed and much appreciated.
I'll sign off today with 3 special words...
Grow cells, Grow!
Thursday, March 22, 2001 at 08:57 PM (CST)
Day -1
Well, she's almost there. Molly has made it through the chemo and ATG as best as can be expected, if not better. Her counts are down, and she is showing the signs of her weakened state, but that's how this is supposed to work! She slept again for most of the day, but was pleasant and happy when she awoke.
Tomorrow holds much promise for our Molly. We are anxious to do the transplant, as it brings so much potential for her. She will be receiving a cord blood unit from a boy who was born here at Duke. The process (transfusion) takes about 30 minutes, we're told, and is sort of anti-climatic. Tomorrow will only be the start of her fight for a healthy life, and the next few weeks will be challenging, to say the least. The effect of all the drugs she endured throughout these past 10 days will start to "rear its ugly head" at the same time her body struggles to accept the new cells and start producing more of them on her own. During this time, the risk of any infection is great, as she has no immune system to fight it off. They say it will take around 3 weeks to measure whether or not the new cells have engrafted, then their growth will be monitored forever more.
Your prayers mean the world to us now. Please keep Molly in your thoughts as she begins her fight for a renewed life.
We love you and we thank you!God bless you.
Wednesday, March 21, 2001 at 08:48 PM (CST)
We interupt this normally well written and highly informative update on Molly for one by her stand-in...your normal author is back at the apartment catching up on some much needed and deserved sleep.
After Jenny's update last night, the affects of ATG started to catch up with Molly. From about midnight on, she was battling a fever for most of the night. The doctors ordered some cultures to be taken to make sure it was just her body reacting to the medications and not a sign of an infection (that would be bad news at this point in the game). Fortunately, everything came back negative and Molly's fever subsided early this morning.
Today was pretty similar to yesterday...kind of droopy and sleepy but not seeming to be in too much pain - still musters up smiles and waves for the doctors and nurses. Right now (10pm) she is on her fifth hour of ATG and she is handling it pretty well thus far. Tonight she also began a new drug called Cyclosporine in anticipation of the transplant on Friday. This drug is an anti-rejecting drug meant to help Molly's body accept the transplant vs. fighting it off as something foreign attacking...she will be getting this consistently over the next few weeks.
Molly received a number of nice letters and cards today at the hospital...thanks to everyone. The cards are already up on the walls and help to further brighten up the room.
If you don't mind me abusing this priveledge of "having the floor" for tonight, I wanted to personally echo what many of you have been noticing and commenting on throughout this process... the amazing job that Molly's mom is doing.
I think every parent is ready to drop anything and everything at a moment's notice for their child. However when one is asked to resign from her job, relocate far away from friends and family and then asked to juggle a number of medical issues/procedures that you never dreamed your child would have to undergo, it tends to takes on a different meaning.
Jenny has truly made the best of a really bad situation...from decorating Molly's room as if it were her nursery (the nurses and doctors can't say enough about how cheery it is..thanks to Allison and Nancy as well), to being her advocate in double checking with doctors and nurses to ensure she is getting the best care, to last but most importantly - keeping Molly her happy and playful self despite all of the awful things she must go through.
Molly, TJ and I have always felt lucky to have Jenny as a Mom/wife, but over the past few months we each have come to appreciate even more how truly special she really is.
We'll return to our regular broadcasting line-up tomorrow...thanks for bearing with me. As Jenny continually says, your thoughts and prayers are a huge source of strength and inspiration.
Take care.
Tuesday, March 20, 2001 at 10:07 PM (CST)
Day -3
Thank you, everyone, for all the additional thoughts and prayers for Miss Molly this week, and especially today.
Molly has had a busy day filled with a respigam treatment, a blood transfusion, chemo, many, many medications, and her first dose of ATG...and she came through it all really well. She was quite a wet noodle all day, spending lots of time sleeping and feeling droopy, but I am very proud of her for being so brave through it all. (If I was in her shoes, I could never do it with as much grace!)
She started the ATG at 4 PM, and has a few more hours to go as I write this, but she has only vomitted once and had a 101 fever. After her fever broke, she was talking, waving with the nurses, and laughing at her Elmo video for the first time today. Overall, it went so much better than we had imagined...I am hopeful that the remainder of the night will go as smoothly, and that tomorrow will follow suit,too.
It is so nice to have John here- he has jumped right in and is providing that much needed extra pair of hands... Not only did Molly fall asleep in his arms twice today, but he graciously let her throw up all over him, too. What a guy! He also let me go home to the apartment to sleep last night (12 hours of straight sleep- I am a new woman!), and he braved the hospital stay quite honorably. He gets the night off tonight!
Thank you for taking time out of your busy day to stop and check in on Molly. If you are thinking of her in your prayers tonight, please mention a special thank you for all of the wonderful people who are providing her such excellent care.The nurses and doctors here are unbelievable.
We'll write more tomorrow. We love you!
Monday, March 19, 2001 at 05:23 PM (CST)
Day -4
Hi,all...
Today, Molly was a bit more sluggish... her blood counts are definitely coming down, and she just wants to sleep in our arms. Even though she was asleep when Dad arrived, he was greeted with a huge grin! She hasn't completely lost her touch! Minutes later, John had her laughing hysterically playing peek-a-boo... it was precious.
We also got a very special visit from the Gosey girls: Hannah, age 5, and Cassidy, age 3. They were both transplanted here for Hurlers at ages 6 months and 3 months. (For those of you who saw the People magazine article about Dr. Kurtzberg, this is the family about whom it was written.)
They are absolutely beautiful little girls, running around the halls, riding bikes, and jumping around happily. They are talking lots and have super little personalities. It was so inspiring for us to see.
Dr. Kurtzberg is the attending physician on the ward for the next two weeks, so we are really happy to have her here throughout our journey. (All the docs are good, but she's the best!)
Molly got her ng tube removed tonight, because it may irritate her throat if any mouth sores come in. All the meds she will take from here on out can be given through an IV. She is handling the cytoxan as best as she can, and will begin her last medicine of the protocol tomorrow night. It is called ATG, and it will help prevent her from rejecting the new donated stem cells. Dr. Kurtzberg told us to expect the worst side effects tomorrow. (High fevers, chills, vomitting, hives) Ugh. It's tough. Please keep praying for Miss Molly.
We're almost there- Friday is the big day!
Sunday, March 18, 2001 at 07:37 PM (CST)
Day -5
Hi, everyone!
Molly actually had a good day today! She took the new chemo alright... she needed a little morphine, as she got a little uncomfortable soon after the dose, but overall, she did great!
She took good naps, looks good, and is smiling and waving a lot!AND, good news! She remembered (or was finally able to) clap her hands again! She's been doing it all day long... It seems like the bruising is continuing to heal in her brain, and she's pickin' up her old habits! Love that!
Her tummy is the same...She is not eating much, but is still taking a bottle every now and then.
John arrives tomorrow morning- we are so anxious to see him! I know he will bring a breath of fresh air into our room...
Thank you for your continued prayers for Molly this week. We are drawing our strength from your support!
Love,
Jenny
Saturday, March 17, 2001 at 08:24 PM (CST)
Day -6
Hello to all and Happy St. Pat's Day! I hope everyone felt some luck of the Irish... Molly was clad in her green shamrock sunsuit and Irish bib (care of Gramma B.), and I wowwed the staff with my Irish Dancing in the halls...NOT!
There was, actually, a lot of "wearin'of the green" today, but not in the traditional sense. Poor Molly suffered through more tummy troubles today. The chemo is reaping havoc on her intestines, that's for sure. She's being so good about it, but diaper changing has taken on a whole new meaning to us here. I'm not sure if it was due to last night's adventure or not... Molly got sick after her 10PM dose of chemo, so they had to re-dose with half the amount. She didn't really throw up the chemo (or so it looked), but she battled through another half dose as best as she could. After a few minutes of obvious discomfort, I finally asked for some morphine for her, which the nurse gave her. Fortunately, that made for a much better night's sleep for both of us.
On a better note, a local church made dinner for the ward tonight. It was delicious! All kinds of lasagna, pastas, salad, fruit, desserts, etc. What a nice change of pace from the hospital food! They apparently do this once a month- how thoughtful!
Tomorrow at 10AM, Molly will start her second kind of chemo,called cytoxan. Unlike the current chemo she is taking via her ng tube, this one is given over an hour through an IV. She is due to have an EKG each morning for the next 4 days, as there are possible coronary side effects that go with this drug. My hope is that she will get through it as well as she has this first chemo drug, but I know it is more intense. Keep the prayers coming... They are working!
Many (Irish) blessings to all of Molly's friends.
Friday, March 16, 2001 at 08:15 PM (CST)
Day -7
Hello, all! Good news... Molly's second test for RSV came back negative! Only one more to go next week, and she'll be out of isolation. Thank you for all of your prayers for her! I am so relieved...
Aunt Nancy went home today. She was so helpful, and such a source of comfort while she was here. We miss her already!
Molly is starting to show signs of not feeling all that great. She isn't horrible, but she's starting to lose her big smile and happy disposition as she just feels yucky. She continues to be a trouper, though, and the ng tube is working great for almost all of her medications.
She developed a secondary infection from all the antibiotics she's been on, which has caused her terrible diarreah and a sore bottom. She is on new medication for it, though, and will hopefully feel a little better from it soon.
The physical therapist stopped by and played with Molly today! She really gave her a workout, and Molly gave her dirty looks when she pushed her too far. We called it quits and took a nap, as she was tuckered out from all the exercises.
We changed her room around a little, to give Molly a new perspective and to give us a bit more floor space. We now have room for her to play on the floor instead of in her bed. We have to buy a mat or something to put down before she actually makes it there, however.
We are very excited to see John next week. He is also anxious to see his Miss Moo Moo, and give her a big hug. The days are actually going by rather quickly... there's lots of action all day long with nurses and doctors coming in and out, mouth care 4x a day, diaper changes, meals, and naps.
We often speak of the "following" Molly has formed around her, and we are constantly amazed by the support and love you've all shown us. Thank you for keeping up with her journey. Even though you are not here physically, you are with us in spirit, holding us near to your hearts and keeping us strong. We love you all!
Thursday, March 15, 2001 at 06:18 PM (CST)
Day -8
Hi, everyone! Molly had a pretty good day today! She is being very friendly to all who come in to see her, that's for sure! She has got the wave down pat, and her dance moves are really improving! Aunt Nancy brought her a big yellow ball (to go with the yellow theme here...yes, we are still dressing like bananas), and she loves it! It makes her so happy!!!!
She is still handling the chemo quite well, without too many complications. The diaper scene is the same, and she's losing her appetite, but somehow, she's managing to smile and giggle!
Tomorrow, she will have her third respiratory/viral battery to see if the RSV comes up negative for the second time. Let's hope so! Until tomorrow, sending big waves and lots of thanks for the prayers...
Jenny
Wednesday, March 14, 2001 at 07:29 PM (CST)
Day -9
Hello, all!
Molly is doing really well... She is taking the chemo fine, and got some great (and needed!) naps in today... the worst side effect so far has been her very sore bottom. She does not like to have her diapers changed, but we have to change her at least every hour to avoid the acidity from the chemo.The doctors are pleased with her blood levels so far, so things must be moving along as they should be. Due to her recent bout of RSV, they are gowning up in yellow robes, gloves, and masks each time they enter the room, but Molly doesn't seem to mind. I also have to dress in the same fashion to go to the parents lounge... I was greeted this morning by a couple who saw me all garbed up and said, "The coffee can't be THAT bad!" At least there is a sense of humor here. I looked like a big banana.She will have to get 2 more negative test results for RSV before the canary garb can go.
Molly's best buddy, Allison, came over this evening to play with her- how nice! This allowed Nancy and me to have dinner together, which otherwise, would be impossible. When we returned to the room, Molly was smiling and dancing, and waving, and da-da-da-ing away. She loves her new friend!
Last night, during the whole NG tube ordeal, Molly said "Ma ma" for the first time. She kept saying it over and over as she cried... it broke my heart! But I'm so glad that she now knows it... you can be sure we're practicing it a lot! Something so small had a huge effect on me and my attitude... Molly knew just what I needed.
She is being such a good girl, I am so proud of her!
She continues to show us how strong and determined she is.
Thank you all for keeping Molly in your thoughts, stopping by her site, and reading her updates. We love you!
P.S. I'll be updating the site each night, probably after 8PM. Hopefully, this will save you some headeaches- I know some of you have been logging on a bunch during the day and finding nothing new to read- Thank you!!!!
Tuesday, March 13, 2001 at 09:37 PM (CST)
Hello again...
I forgot to list the room and phone number here in today's update. We're in room 5204, and the phone number is (919) 681-5204. I'm going to try to set up the computer on another line, but that's tomorrow's task. I think the address is listed on the web page for you. (Can you tell I'm exhausted?)
Thanks for taking the time to log on and read Molly's updates. Sending all our love from Duke!
Tuesday, March 13, 2001 at 08:54 PM (CST)
Well, we made it. Molly is officially moved into the BMT ward. We arrived around 3PM, and after unloading all our luggage, Aunt Nancy got very busy decorating Molly's room-she was such a HUGE help! Thank you, Allison Coho, for all the cute cut-outs and decorations! Molly has a very happy room!
After getting her crib (finally!) they started giving her medicine, which she was very good about taking. She waved at everyone who entered the room, and got lots of smiles in return. The nurses have all been wonderful! Dr. Kurtzberg came in to give her one last look before the chemo starts, and she was pleased with how great Molly seems to be doing.
In addition to an EKG and a chest x-ray tonight, her latest feat was getting an NG tube put through her nose down to her tummy. To say the least, Molly was not at all pleased about this procedure, and it took 3 nurses 4 tries to get it in correctly. They knew they had it when the carrots she had for dinner made their second appearance... I won't say anymore... She was a champ!It's going to help get the chemo into her system without fighting her to take it orally, but it'll take some getting used to, that's for sure.
She is now sleeping soundly after quite a long, busy day. She gets her first chemo treatment at 4AM... I'm hoping she'll be too sleepy to realize it's happening.
Being here, however, has definitely made me realize this is all happening, and my emotions have been up and down all day. I so badly want her to get better, but what she has to go through to get there is hard for me to swallow. I will remain strong, however, knowing we have the best support system in the world! Thank you for your prayers for our family, and especially for Molly.
Monday, March 12, 2001 at 09:31PM (EST)
Dear Friends and Family,
First off, thank you for your patience these last few days. I just got the word that Molly tested negative for RSV...our prayers have been answered! She will be admitted tomorrow to begin the transplant process.
The regimen will begin tomorrow afternoon with various drugs (anti-seizure meds, antibiotics to prevent pneumonia, and meds to prevent liver disease), but her first chemotherapy treatment will be at 4AM on Wednesday. The chemo will continue for 9 days, making her transplant day Friday, March 23rd. Miss Molly is healthy and strong again... and in good shape to begin this strenuous journey.
Aunt Nancy arrived safely this afternoon, and will be with us all week! We are so glad to have her here... she is such a support, and Molly loves "da da da-ing" with her.
Again, thank you for all of your encouragement, friendship, and prayers. You are helping us get through each step of this endeavor with strength and determination.
We love you!
Sunday, March 11, 2001 at 07:01 PM (CST)
TJ and John flew home safely today, much to our dismay. We had such a FUN time together!We miss them lots.
Molly is doing well... I'm very hopeful tomorrow's test will show negative results for the RSV. (I'll be shocked if it doesn't!) Molly ate real bananas today, and loved them! To top that, she successfully got a cheerio in her mouth! She now entertains herself by dancing to Elmo, and she waves bye-bye to the Teletubbies. She seems to have regained the strength and attitude necessary to start the transplant process this week.
Your prayers are working! Thank you for thinking of her this week.
Saturday, March 10, 2001 at 02:12 PM (CST)
We've had such a nice time with TJ here! We took a long walk in the Duke gardens, and today, he went to Chuckie Cheese with dad. John arrived on Friday evening, and we're enjoying being a "family" together again. Outside of her irritated central line sites and daily dressing changes, Molly seems to be doing well. We got her picture taken today, before she heads into the transplant process. She was so happy! I can't wait to see how they turn out.
Thank you for all of your prayers and good thoughts for Monday's respiratory tests. I know they are working!
Wednesday, March 07, 2001 at 04:28 PM (CST)
Hello, all!
I have a little assistant, TJ, here helping me today. He has dictated the following to me:
"Molly is sick and she has these things that goes in her tummy so the medicine can go into her mouth. She's not feeling good 'cuz she's still sick, but we will take her to the doctor tomorrow so she'll get all better. Molly is happy that I'm here because we're a family here. She's says "da-da" to me when we ride in the car, and she gets a big smile when she sees me."
Needless to say, TJ and Patty definitely brought a breath of fresh air to our apartment, and things have not stopped since he walked in the door!!! I forgot how busy he is, but I love it!
Molly had her IV infusion of Respigam yesterday without any reaction, and will get another respiratory/viral test next Monday. If it comes out negative for the RSV, she'll be admitted the following day. Please pray for her...as hard as it is to think about, we really want to get moving on the transplant before she turns 1.
She is feeling much better, is laughing and cooing at her brother's antics, and is totally amused by his constant motion. We are going to take her for a physical therapy appointment tomorrow to work on her left side.
How fun it was to meet the Wigglesworths! Maddy is a sweetheart- it was so inspiring to see her doing so well at age 3, 18 months post-transplant. What a cutie!
Thank you for your support and love. We will write more in a few days.
Monday, March 05, 2001 at 07:53 AM (CST)
Good news! Molly is feeling a lot better. She's eating again, and is much more playful and giggly. Her congestion is minimal, mostly a cough now. Thank goodness.
Today, a home health nurse will be coming out to teach me how to change her dressings. This will allow us to be a home for the next week, with no clinic visits.
(The exception being tomorrow, when Molly sees Dr. Kurtzberg and gets the IV infusion of Respigam.)
I'm hardly thinking straight, because TJ is coming tomorrow! I wish Molly understood, and could show anticipation for her big brother. She is going to be so tickled when she sees his face! I can't wait!
Thank you all, near and far, for your warm thoughts and encouraging words. We are so blessed with wonderful friends and family!
Molly sends you a big hug!
Saturday, March 03, 2001 at 07:43 AM (CST)
Hello to all, and Happy March! I can't believe we've been here for almost 40 days... Molly is really battling this RSV. She's still pretty congested and wheezy, and won't eat anything. Combined with her continued teething (those darn things STILL aren't in!), she's not her cheery self.
We saw Dr. Kurtberg yesterday, and after listening to Molly's chest, she determined Molly will need another dose of Respigam next week. Then, after another week of healing, she thinks she'll (finally!)get admitted on Tuesday 3/13 to start chemo. Keep your fingers crossed! (Poor Aunt Nancy, she deserves some recognition... she has changed her airline tickets 5 times to "groove" with our ever-changing schedule... thank you!)
Dr. Kurtzberg also gave me the "ok" to go out in public with Molly. We promptly headed to Target, Mom's favorite place, to buy a vaporizer. We won't make these trips too frequent, just to be safe, but Molly LOVES going in the car! As soon as we step out of the apartment, she gets a big smile on her face, and says a big "DA!" knowing that we're headed for the van.
We're looking forward to meeting the Wigglesworths, our cyber-friends from Florida, this weekend. They are here for a post-Hurler BMT check-up with their daughter, Maddy. They were very instrumental in helping us realize Duke's program. It will be so nice to put a face with all the emails we've exchanged!
And, of course, we are anxiously awaiting our visit from Aunt Patty and TJ- a dose of much-needed medicine for us! Check back next week, as I'll update the journal after Molly has her IV infusion.
Thank you for all of your continued prayers for Miss Molly. She has so many angels caring for her out there, and we are so grateful!
Thursday, March 01, 2001 at 12:53 PM (CST)
Molly had the IV infusion of respigam on Monday. Today, she got the stitches removed from her head, and the neurosurgeon noted the movement of her left side.We'll check back with him in 3 months to make sure she is progressing with it.
We're still going to clinic daily to get her line dressings changed, but the sites are looking better than earlier this week, and ended up not being infected. She's still really congested and crabby (not like the Molly we know and love) but I can't blame her. A cold with an ear infection and teething, on top of everthing else she's gone through... is no fun. We're now just trying to get lots of rest, and stay away from too many germs...
It was disclosed to me yesterday that John and Aunt Patty were plotting a surprise visit from T.J. next week... I am so excited to see him, I can barely stand it!(It's been a month since I've seen him- longer than EVER before!) I'm hoping all goes well in the next few days so we can have a good, healthy, visit. I know it will be a good pick-me-up for Molly, too.
Thank you all for your encouraging words... I love to read the guestbook entries, they've helped me take this setback lightly.
Take care, all! Molly loves you!
Wednesday, February 28, 2001 at 06:32 AM (CST)
Good morning, all! We got a call from Dr. Kurtzberg last night, who told us Molly's tests came back positive for RSV. While she is exhibiting the symptoms of a common cold, this virus is something that could lead to pneumonia once we are in the transplant setting. So, Molly will go to the clinic today to receive IV antibodies (Respigam), which we hope will cure it. Normally, her body would take up to 2 months to completely cure itself from the virus, so we are lucky that Dr. Kurtzberg is willing to push the envelope and get her better as soon as possible. She will check Molly again next Monday, and if the test comes back negative, we may be moving forward to chemo, etc. Otherwise, we'll have to wait one more week to get a negative result.
Our feelings are mixed- we are frustrated that Molly has RSV, as she was tested for this in her battery of respiratory/viral tests just 2 weeks ago, and it came back negative. So while I tried my hardest to keep Molly sequestered within the apartment for a week, she must have contracted it while in and out of the hospital, or from the home health nurse, who was not well. It is an unfortunate setback, but the good news is that once she gets the antibodies and is cured of RSV, her chances of getting it during transplant time are reduced to none.
Due to this delay, John will be going back home for another few days, and depending on Molly's test results, will return when she is ready for transplant.
Thank you for your prayers and words of encouragement. Molly definitely has a wonderful support system looking after her! She even has friends in Sweden and Australia- WOW!
In closing, I wanted to let you know how well your prayers are working! I received this from Susannah's dad this morning.
*******************************************
After an extraordinarily scary weekend, Susannah
is now recovering with the strength that we have
all grown to expect. She is definitely a champ!
Without exaggeration, she was truly at death's
door. While we are still waiting for the dust to
settle, we now have hope that, with time, she may
yet gain a full recovery.
*******************************************
We'll be in touch! Love, Jenny
Tuesday, February 27, 2001 at 05:04 PM (CST)
Well, we made it... back to the apartment, that is! Our bags were packed and we were ready to go, but unfortunately, the irritability and congestion we thought was due to teething turned out to be a possible infection... Thus, we were sent home with an antibiotic for another 5 days.
This turn of events was not what we had wished for, but we are following the course of action planned to get Molly to 100% before she starts chemo. We agree that this is best, but we are hoping to be admitted to the hospital by Sunday.
Thank you for your continued positive thoughts and prayers. Good night and god bless you all!
Sunday, February 25, 2001 at 10:22 AM (CST)
Dear Friends,
We want to send a big thank you to everyone who participated in the Molly Bowl 2001 yesterday. We are overwhelmed by the outpouring of support for Molly! We hope everyone had a fun time!
We don't have much to update from our neck of the woods, other than John arrived safely last night, and Molly is doing well. She loves her dad so much! It is so fun to see her smile and laugh at him... and of course, steal his hat off his head.
We do, however, have a special prayer request to ask today... but not for Molly. It is for a little girl named Susannah. She is about 2 years old, and has undergone two transplants for Hurlers in the last 2 years. Her little body is working so hard to recover from the second transplant...She has been a real fighter- for a long time. Although we have only met Susannah's mom once, while we visited MN, we were struck by the resemblence Molly and Susannah share, and couldn't help but think the pictures we saw of her were foreshadowing what our Molly will look like. (or so we hope- Susannah is SUCH a cutie!) After meeting them, we asked to receive updates on Susannah. And like you have with Molly's site, we read and feel her every step on this incredible journey.
This morning, we received the following update. I share this with you only because all of you who are reading Molly's updates have shown us the strength of your prayer. It seems the least we could do for another family who needs the power of prayer more than we do at this moment.
*******************************************
Last night at around eleven o'clock, Susannah
suddenly went into respiratory arrest. After
more than five hours of intensive intervention,
she was finally stabilized on a ventilator,
requiring full blood pressure support. There was
much uncertainty as to whether or not she would
make it through the night.
At this point, she appears to be sustaining, but
her condition is still quite tenuous. We have no
idea what set off this turn of events, nor can we
anticipate what the future holds.
Susannah is a very sick little girl right now.
We ask that you keep her in your prayers, now
more than ever.
*******************************************
Thank you and God bless,
Jenny
Thursday, February 22, 2001 at 02:24 PM (CST)
We met with Dr. Kurtzberg today, and she wants Molly to take a few more days to heal before beginning chemo. So, as it stands now, we'll be admitted next Tuesday to start chemo on Wed. AM. Which would make transplant day Saturday, March 10th (I think I counted that right). However, we are not going to hold our breath, as we know this could change again, in an instant. I was pleased to get her blessing that Molly looks good and is improving.
She saw the MRI, confirmed the bruising, and said it should have no long-term effects at all. Whew! She also pointed out that the ventricles of her brain have reduced in size, so the shunt is working, and was necessary! I mentioned how Molly's eyes are not as puffy, as she said it is directly related to the shunt. It is so nice to see Molly's eyes!
Speaking of our little angel, she waved with her left arm and clapped her hands yesterday! I was so afraid she'd forget how to do these things, but she's comin' back strong...
She is very talkative and loves to laugh at her books. Her tooth-to-be is still keeping us up ALL night long, but I guess, given the circumstances, she's allowed to complain about something!
She is now starting to talk back to John and TJ on the phone- it's pretty funny! she'll mock them or give them a little giggle...Everyone's prayers are working, and your support continues to amaze me.
To all participating in this weekend's bowling event for Molly, we thank you from the bottom of our hearts. We are overwhelmed with the efforts put forth on her behalf. Have a great time! We can't wait to see the video.
We'll write more next week.
Wednesday, February 21, 2001 at 04:21 PM (CST)
Today was rather quiet- a nice change of pace, actually. Molly is doing well, still working on the left leg and arm, but definitely improving with each day!
The home health nurse came out to teach me how to flush Molly's central lines and change her dressings... It took 2 hours, but we got it done. Tomorrow she's coming back to help me again. Each day will get easier, I'm sure. I'll be doing this for a year post-transplant, so I'll probably get to the point where I can handle seringes and alcohol swabs with my eyes closed. For now, it's a bit overwhelming. Molly was very patient as her mommy tried to learn.
We have a meeting with Dr.Kurtzberg tomorrow afternoon to discuss the final pre-transplant details, and hopefully she'll confirm our Sunday admittance to the hospital.
I'll write more after the meeting.
Thanks for all of the cards, emails, guestbook entries and warm thoughts for Molly and our family. Your support is unnending, and it helps so much!
Love,
Jenny
Tuesday, February 20, 2001 at 07:01 PM (CST)
Just wanted to let everyone know that the MRI confirmed that Molly has a bruise on her brain, which will heal itself. She is coming around, laughing and smiling again, and making more effort to move her left arm and leg! It's nice to have her back after a few days when she wasn't quite herself. We are also very thankful for everyone's prayers for her, especially over the past few days. Thank you!
This week will be pretty quiet. With home-health coming to the apartment to teach me how to flush Molly's central lines each day, we won't need to make a trip to the clinic or hospital until Sunday, when she is admitted.
John went home today to see Mr. T.J., who is doing really well with this whole situation. We thank God for that everyday. He is surely missed here in Durham, but he is in good hands at home, and will hopefully visit us soon.
Monday, February 19, 2001 at 05:50 PM (CST)
Molly is showing slight improvement in moving her left arm and leg today. We took her to the clinic to get her lines flushed, and the doctor ordered an MRI for her- just to get a little more information on her brain activity. We spent the entire afternoon there, waiting a lot, and won't know much until tomorrow. Molly is sleeping soundly after not eating or napping all day-what a trooper. They had to sedate her for the MRI, so she's off in laa-laa land for awhile.We are pleased with her progress. She is trying to roll over and she is laughing again, both which are very encouraging to us!(I know having her dad here has been a big influence on her positive attitude!)
Thank you all for your concern. I got so many emails after yesterday's postings. It's so nice to know you're thinking of us.
Just a little note to those of you with babies... The BMT ward here gets $0.06 for each Heinz baby food label collected. If you use this brand and want to save and send them, I'm sure that would be appreciated! You can send them to me and I'll be sure they get to the collection box. Thanks so much!
Sunday, February 18, 2001 at 01:44 PM (CST)
Today posed a bit of a scare to us... As Molly had been becoming more "herself" post-surgery, we noticed that she had limited use of her left arm. She had been using her right arm to wave, rub her eye, and grab things, but her left arm has remained limp at her side for over 24 hours.
When we took her to the BOPP room (the outpatient care room on the BMT ward)today, we mentioned our concerns, and as the nurse flushed her central lines, Molly reacted by kicking her right leg...with no movement from her left leg at all. We became more concerned... and spoke to a doctor on the floor, who seemed to share our concern and reported it to neurology. Neuro ordered an emergency CT scan of her head, and about 3 hours later, we were told by a neuro resident that the shunt has probably caused some bruising and swelling on the right side of her brain, which is affecting the nerves that control her movement on the left side of her body.
He seemed to think it would possibly get worse before getting better, but that it will heal itself, and we shouldn't worry too much about any long-term effects. I guess this is good news, but I still don't feel good about it. I am so glad John was here with me to go through this whole ordeal.
Molly gets an award for teaching her parents how to be patient. She continues to amaze us with her calmness and serenity in the face of a crisis. With the exceeption of her left side, she is bouncing back to eating, talking, and playing with us... Please keep her in your prayers that the healing in her brain will begin promptly, without complication.
I will update you on any progress as I learn of it...Love, Jenny
Friday, February 16, 2001 at 05:12 PM (CST)
Today, Molly returned home to the apartment. She is still in a lot of pain from the shunt surgery, and the medicine makes her sleepy. It's hard to hold her without her flinching from the pain, which is breaking my heart, but I know she'll get better with each passing day. She is strong. This week at home will give her a chance to be in tip-top shape for the transplant, we hope. With Grandma and Pop Pop here,she'll have plenty of attention and lots of love.
John arrives tomorrow! He misses his little "moo-moo" so much. It will really cheer up Molly to see her Daddy (a.k.a "Da-da-da-da-da-da!").
I am pleased to let you know that there are pictures in Molly's photo gallery, due to the efforts and kindness of Liz Deegan. Thank you, Liz! They really made me smile!We'll keep them updated in the future.
Have a nice weekend. We love you!
Thursday, February 15, 2001 at 02:47 PM (CST)
I am sitting next to Miss Molly, who is resting peacefully in her bed after yet another surgery. She came through this one well... the neurosurgeon was pleased with the procedure. Whew! She is amazing.
For those of you who don't understand what a shunt is, I'll try to explain it to the best of my ability. I'm still kinda new at this as well, so forgive me if I mis-speak.
Inside our brains is a cavity in which liquid lies. It is the same liquid as found in our spinal columns. Sometimes, children with Hurlers can experience elevated pressure from increased amounts of this liquid. (Molly's measured at 29 and 24. Normal range for her size and age is 14.) Hydracephalus can result as the pressure increases in the brain.
The shunt's job is to relieve the excess pressure on the brain by draining the excess fluid from it. Today's surgery involved placing a shunt, or valve which can sense the level of fluid, just under her skin on her head. Attached to the valve is a tube that runs from the inside of Molly's brain, out through her skull, down her neck and back, and around into her abdmominal cavity. Any excess fluid in her brain is sensed by the valve and drained through the tube, where it is eventually absorbed into the lining of her abdomen. In the most basic sense, this shunt sets a safety system in place should her pressure rise during the transplant or thereafter.
(and it's all inside!)
While it serves to prevent development of hydracephalus, it can also be a source of infection during the transplant process, however. We hope this will not be the case, obviously. The benefits of it greatly outweigh the risks, thus, our decision in having it placed.
Molly has successfully undergone 3 surgeries in 2 weeks- due in great part to her strength and determination, but also because of your prayers for her. God is watching out for our little angel. He is hearing the Miss Molly prayer storm, and for that, we are most grateful.
Grandma and Pop Pop Ahern arrived safely today, as Uncle Bob flew back to Chicago.
Once Molly gets off her hit of morphine, I'm sure she'd give everyone a big smile...
I'm sure we'll stay her tonight, then move back to the apartment for about a week. We HOPE she is scheduled to begin chemo on Feb 26th, but we're not going to hold our breath, as anything could happen before then to delay us. Let's hope not!!!!
Love to all- and thanks for taking the time to read these updates!
Jenny
Wednesday, February 14, 2001 at 08:45 PM (CST)
Just a quick update before we retire to bed for the night. Molly is scheduled to have the shunt placed tomorrow (Thurs. 2/15), I just don't know at what time yet.
She has really bounced back from the central line surgery! And she's picking up a southern drawl, too. A lady just came in to take a chest x-ray of her for pre-op, and when I asked Molly to say hi, she usually waves right away, but this time she added a big "Haaaaw!" I was cracking up. People are coming in now saying, " So THIS is Molly... I've heard about you, girl!"
She is being such a champ. Will report more tomorrow.
Good night and God bless you all!
Wednesday, February 14, 2001 at 12:39 PM (CST)
Hello and Happy Valentine's Day to all! Thank you for your patience... I've had a hectic 24 hours...
However, Molly came through her surgery yesterday like a champ! Our little "pin cushion" was poked over 8 times in an effort to find a vein for her IV, but now that her central lines are in, she'll never have to have a needle poke again! Yeah!
Her spinal pressure measured 24, less than the previous 29 (our prayers WERE answered), however, the doctors felt it was not low enough to warrant her bypassing the placement of a shunt.
So, we are waiting for neurosurgery to get back to us with a date and time for the surgery, hopefully before Friday. After that, we'll probably go back to the apartment for about a week before returning to start the chemo, etc. The news was a bit deflating to us, only because we weren't considering that long of a healing time, and we really wanted to get moving on the transplant process while Molly was well. However, we are completely on board with the decision, and know that the shunt will prevent her from getting hydracephalus during transplant... a situation we would rather not deal with when her counts are low, and surgery becomes much more high-risk.
Molly is resting peacefully now after a "not-so-great" night's stay in the hospital... Machines were beeping, and she had many tubes attached to her, not to mention the soreness from the surgery. Well, the tubes have been removed, and she's coming around just fine. She is an angel... She will wave hello to anyone that comes into the room, regardless of her mood!
Thanks to everyone for all of the Valentine and Birthday wishes... they've really made me smile! I want to thank everyone who contributed to this laptop, too. It is such a source of strength for me. At any time of day, all I have to do is log on, and I receive so much support- it is amazing. I feel very blessed!
Molly is also lucky to have so many people thinking about her and praying for her... She sends her love and a big "wave" of thanks to all!
I'll write more as I learn of the shunt surgery. Until then, I hope each one of you gets a special Valentine hug! Consider this our "cyber-hug" to you!
Monday, February 12, 2001 at 07:06 PM (CST)
We had a long meeting with Dr. Kurtzberg today. She confirmed that all of Molly's pre-transplant test results looked good. We got lots and lots of details on the whole transplant process, which I won't share now, but as they unfold... My brain is fried from information overload.
Molly's central line surgery is scheduled for tomorrow, Tuesday 2/13, at 12:15. Prior to this, she has to have one last blood draw- yuck! Please keep her in your thoughts for a safe surgery, and maybe ask a special favor from the Big Guy that her spinal tap shows normal pressure. That way, she'll be admitted to the hospital and chemo will get underway at 4AM on Wed. Otherwise, she'll have to have a shunt surgery scheduled, which will push the chemo back, best case scenario, to next Monday. Not the end of the world, we realize, but it would be a real bonus if she didn't need one.
Thank you for all of the cards, guestbook entries, and warm thoughts. They are keeping us going!
Molly sends her love and a big thank you!
Sunday, February 11, 2001 at 09:42 AM (CST)
We had a nice weekend with Grandpa B. here. He took such good care of us! Molly was able to perfect her favorite pasttime, which is pulling off Grandpa's glasses and hat! She just wouldn't stop. Grandpa, of course, was such a good sport, and offered her the occasional "raz-ma-taz", as he refers to it.
This week, Molly is scheduled to have her central line put in on Tuesday 2/13. They are going to do another spinal tap to check her opening pressure. Although her CT scan and MRI showed no evidence of hydracephalus, this pressure check will give them an confirmation of whether or not she'll need to have a shunt. I will learn more about the shunt at my Monday afternoon visit with Dr. Kurtzberg.
I'll also find out then if Molly will be admitted to the hospital to start the transplant work-up after her central line is put in. I hope that is the case.
Otherwise, Molly is doing well. She is really trying to get a tooth! She has learned to wave when you say "Hi!" to her... it's pretty cute.
Love to all!
Thursday, February 08, 2001 at 11:57 AM (CST)
Well, as of today, Molly has completed her pre-transplant testing. At her second hearing test (post-tubes), her hearing was normal, and actually a bit better than prior to having the tubes. Good news!
During the test, which involves her sitting on my lap and listening for sounds through a speaker, the audiologists trained her to look to the left, where a stuffed animal monkey lights up and clangs cymbals. (I'm sure some of you are familiar with this.) Anyway, because she had done the test before, she was familiar with what was going to happen, and would clap her hands in delight every time she saw her old pal, Mr. Monkey. When the technicians were transitioning to a new test, she would even turn and look for him like, "Hey, bring him back here! I want to see my friend again!" The audiologists were hysterical over her antics. She just loved it!
She also had a CVC (Crying vital capacity) test, wherein they put a mask over her nose and mouth to make her cry. It was not a big deal at all. As a matter of fact, being so easy-going, it took Molly awhile to even get worked up over it! But, nevertheless, with a big gulp of air, she proved to have normal lung capacity. More good news!
They also sampled her respiratory fluids to test for any virus or bacteria in her system. We'll hear back about that later. If they do find something, she'll need an antibiotic, but hopefully, it won't fool with her transplant schedule. Keep your fingers crossed.
Grandpa Birmingham is coming to visit us this afternoon! We are anxiously awaiting his arrival. Molly is napping peacefully, and we are both enjoying the warm, sunny weather tremendously.
Love to you all and thanks for all the prayers.
Jenny
Tuesday, February 06, 2001 at 06:38 PM (CST)
Whew! Today was a long day. Molly was a trooper. She waited a LONG time for her appointments, sitting in her stroller, and barely complaining at all.
That is, until the eye doctor had to put drops in her eyes to dilate them. Watch out-they should've conducted their lung capacity studies then! She was so tired, and so mad, you could hear her scream outside the building! (I was surprised all of the windows were still intact.) Then, as if that was not enough for her, the drops were not effective, so they had to try a second time. Which finally ended up in the doctor having to physically push her eyes open while shining a very bright light at them... all which made Miss Molly one unhappy child. It was ugly. (The doctor felt so bad!)
On a better note, all of Molly's tests are showing normal to minimal effect of Hurlers. The neurologist was pleased with her physical and intellectual development so far, seeing no major losses at this point. The orthopaedic MD noted that the curve in her back and the stiffening of her joints is minimal, and will be watched in the future. Her neck and hip bones look good... both which are usually quite affected by the disease. The opthamologist noticed some corneal clouding, which we knew (that's how this whole thing started in November), but she said it will probably lessen, if not clear up completely, after the transplant. It is not affecting her vision at this point. This is such good news! Everyone's prayers are working, I am sure of it! This will, hopefully, give her much more opportunity for a better life post-transplant.
Tomorrow, Molly has some interesting tests to undergo: one of which tests her crying vital capacities! (They are going to make her cry on purpose!) Boy, this just gets more fun every day! She is being really good about all of the poking and prodding(with the exception of the opthamologist). We always get a smile from her before leaving each appointment.
The antibiotic she is taking for the post-surgery infection is working- she seems to be getting her appetite back... Oh, big news: Molly had her first Cheerio this week. She was so thrilled about it, she giggled every time I'd put one in her mouth. This is now our favorite game. She's getting the hang of them, and loving them! Perhaps her recent bout of teething will produce something soon to help her chew her Cheerios!
We are meeting with Dr. Kurtzberg next Monday to discuss all of the test results and to confirm a date for Molly to be admitted to the hospital to receive her central line. The jury is still out as to whether or not she will need to have a shunt placed in her head- we'll know more about that after the meeting with Dr. K.
Thanks again, for all of your notes and words of encouragement. Thank you, too, for showing an interest in reading these entries about Molly. Your support means the world to us, and it really keeps us going through each step of this process.
Molly sends a "pat-a-cake" and a huge smile!
Sunday, February 04, 2001 at 01:25 PM (CST)
John flew home today with TJ, Grandma and Grandpa. We had a nice weekend together... Unfortunately, TJ had a cold, so we had to keep him apart from Molly for the most part. He and Jenny stayed at the apartment and got things "settled" for Molly, while John and Molly stayed at the hotel. Grandma and Grandpa B. bought Molly a crib with all the fixins so she would be comfortable in her new "home". They were such a big help!
We think Molly developed an infection from her surgery- she hasn't been sleeping or eating very well, and the poor thing has terrible breath, so she's on an antibiotic for about a week. We were so concerned she was getting a cold, because she's showing all the signs of it. Unfortuntely, that would throw off the whole schedule for her transplant, but hopefully, that's not the case. Things should start to look better this week.
She has more testing to complete this week before we meet with her doctor to wrap up all the results and get a better idea of when she'll be admitted to the hospital to start the transplant process. I'll write more as we learn of new things.
Thanks to all who have signed the guestbook-it really brightens our day to read all of your encouraging messages. Continued thanks to all for your prayers and good thoughts for Molly.
Molly sends a "so big" and a kiss...
Thursday, February 01, 2001 at 10:54 AM (CST)
Per our email 1/31:
We're writing to let you all know that we've made a decision about where Molly's BMT will take place and that things will likely be getting underway soon.
After much consideration and visits to Minnesota and North Carolina, we've decided to stay at Duke University Hospital in Durham, NC, to undergo the transplant. We are extremely impressed with Molly's doctor (Dr. Joanne Kurtzberg) and the facility here, so it will be our "home" for the next three months or so.
Right now, we are in a hotel near the hospital, but will be moving to an apartment by the end of this week. While Molly is in the hospital, we will be spending most of our time there, and using the apartment sparingly.
However, the address to our apartment is:
3611 University Drive, #13A
Durham, NC 27702
Phone # 919-419-9776
As for Molly's schedule, there is a lot of pre-tranplant testing to be done, so we could be looking at mid Feb. for the actual transplant. Once she is admitted to the hospital, we will forward the address and phone info as well.
Things are definitely moving along! To date, she has undergone an MRI, EKG, chest x-ray, a battery of hearing tests, numerous blood draws and, as of Tuesday, surgery to have tubes put into her ears and get her adnoids removed - a "bonus" was the spinal tap the doctors performed while she was under anesthesia for this operation. All of this is such a drop in the bucket compared to what lies ahead...she's been a real trooper!
We cannot tell you how much we feel your prayers and good thoughts coming our way. To our families and all of the people in Chicago who participated in the Bone Marrow Drive, a huge hug and a big amount of thanks goes out to you! We saw the coverage on the WGN news while in Durham, and we could hardly believe our eyes. We also received the email regarding the bowling fundraiser, and are overwhelmed by the thought and planning that has gone into it! We're sorry we won't be able to be there with everyone...but you can be assured our hearts will! To both LR and Discover people, all that you've done for us is unbelievable. Thank you to everyone- Your support is amazing!
We are hoping and praying that our decision is the right one for Molly. Undoubtedly, the road ahead will not be an easy one, but with your prayers, we know we'll (she'll) make it through.
TJ, Grandma and Grandpa Birmingham are to arrive today for a visit- we are so excited! We will write more next week after the visit and some more of Molly's tests have been completed. She is healing well from her surgery. She is very proud of her new trick "SO BIG!" and follows it up with a big grin and a prompt round of applause for herself.
Thanks to all who have sent notes our way- they mean the world to us!!! Take care...
Jenny, John and Molly
Sunday, January 28, 2001 at 07:47 PM (CST)
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