Peek-a-Boo

 

Playing Peek-a-Boo with Mom

Looking Towards the Future

Me & My Mom

It has been a very busy few weeks in the Denby household. 3 weeks ago I went to St Luke’s to get my skin graft redone. It all happened kind of fast, but the deadline for beginning my next treatment is bearing down on me and to avoid various infection risks when that starts, I need my various surgeries to be as close to healed as possible. I spent 5 days in the hospital tethered to the vacuum pump and an IV. I only got up to use the facilities. It was really hard; being in the hospital is not fun under the best of circumstances, but being separated from Lillian was really awful. I finally got to go home on a portable vacuum pump right before the Memorial Day holiday weekend. Of course, the pump decided to stop working on Sunday. So, while on speakerphone with Dr Izadoost, my plastic surgeon, and following his instructions, my mom removed the pump, took and sent pictures of my back to Dr Izadoost with her cellphone, then redressed my wounds. It made for an exciting holiday!

I met with Dr Darcourt, my oncologist, to discuss treatment options. If all insurance approvals go well on June 23rd I will start a regimen of pegylated interferon. Pegylated Interferon was just approved by the FDA in April and requires only one shot a week; the current standard treatment requires 5 shots per week. There may be a slight diminishment of side effects as well. The protocol for this interferon calls for a 5 year regimen, however if there is a clinical trial, or new treatment Dr Darcourt may choose to switch me to a more beneficial treatment later.

My first few months on Interferon will likely be tough. I will probably have flu-like symptoms and nausea, and most likely Dr Darcourt will prescribe an antidepressant as a preventative measure — depression is one of Interferon’s more serious side effects. But Interferon increases my chances of a lengthy remission. Josh will learn to check my lymph nodes and moles. I will have follow ups every 3 months for the rest of my life.

Dad & Me

I am very glad to put the surgery part of this ordeal behind me for now. I want to personally thank everyone for their generous prayers and good wishes, and especially to thank all of you have helped us with food and other kindnesses. Cancer is a very lonely diagnosis: I am sure I would not have made it without all of your support. It means so much to us to know how much you care for our little family.

Trying to get comfortable

Lillian continues to grow by leaps and bounds. She is a crawling pro now — much to the cats’ chagrin. She eats 3 meals of cereal, fruits and vegetables a day with gusto, as well as sucking down copious quantities of formula (it’s a lot more expensive than breast milk!). Most nights she sleeps through the night. The most astonishing thing is how her personality continues to develop. She is a charming, funny, mischievous girl who loves to explore and play. She has been on several outings and has even joined us for dinner at a restaurant. She is finally back in the care of her mom and dad at night.

Thank you for your prayers and support.

Lillian’s First Crawl

Lillian Grace and Ashley Denby Update: 5/11/2011

Me and my mom

Lillian Grace is 275 days (9 months, 2 days) old today; her adjusted age is 5 months, 9 days. She’s been home from the hospital for 4 and 1/2 months!

Lillian’s Official Stats as of Tuesday, 5/11:

• Height: 65.4 cm (.9 cm gain) 25.75 in
• Weight: 6804 gm (439 gm gain) 15 lb
• Head Circumference: 41.3 cm (1.3 cm gain) 16.26 in

My dad, my cat and me

Lillian had her 9 month check-up yesterday; Dr Rowland, her pediatrician, said she was “perfect”! (We agree with that assessment). Her development is right on track for her adjusted age. Her strength and muscle tone are excellent, and Dr Rowland thinks she’ll be sitting and crawling within the month. She’s eating cereal, fruits and vegetables twice a day and, as soon as she can sit on her own, will start to use a high chair and a sippy cup, and will get to try some meat.

Dad feeding me cereal and bananas

Ashley went to her surgeon, Dr Albo, for a follow-up today. Dr Albo removed the drain she’s worn since her last surgery and also removed the sutures from the site of the drain. Josh and Nancy will continue to change her dressings twice a day and she’ll go back to see Dr Albo in two weeks. Ashley is thrilled to be free of tubes and wires; she’s in a lot less pain, but still very limited in what she can pick up (i.e., she can’t pick up Lillian) and gets tired pretty quickly… but she feels a little better each day, and thinks the worst of the surgical part of her treatment is behind her. She sees Dr Darcourt, her oncologist, tomorrow, and they will decide on what non-surgical treatment is next.

Thanks for your prayers and support!

Ashley and Lillian Grace Denby Update: 5/7/2011

Ashley went for her follow-up visit with her surgeon, Dr Albo, on Friday. The results of the biopsies of the 30 lymph nodes Dr Albo removed from under her left arm: no malignancies! This is the best possible outcome for someone with stage 3 cancer; survival and cancer recurrence odds are directly related to the number of cancerous lymph nodes found. Dr Albo left the drain in her wound at least until next Wednesday; he’ll evaluate it then — he may need to open it back up to do some cleaning, but it appears to be healing well.

Last Wednesday, Ashley’s plastic surgeon checked the wound on her back from her original surgery; while overall healing is going well, the skin graft failed (largely as a result of movement and pressure related to further testing and surgery), so he removed what was left, and will do another skin graft in a few weeks. While she has to change (with help, of course) the bandages and dressings on that wound three times a day, she no longer needs to keep it completely dry; this means she can take a more or less normal shower.

We don’t have any current measurements of Lillian, but she appears to be growing like a weed. She is sleeping very well at night (mostly) and is in constant motion when awake. She can skooch across the floor on her back and roll over and over; she is trying to crawl, but not quite there yet. She quite suddenly developed an interest in the three cats who inhabit her home: the cats aren’t very happy about this development. While Ashley still can’t pick her up or hold her, Lillian lights up whenever Mom walks into the room.

Thanks for your prayers and support.

Peek-a-Boo with Dad: A Video

Ashley and Lillian Grace Denby Update: 3/30/2010

In the great outdoors...

Lillian Grace continues to grow and flourish: she now weighs just over 14 pounds, loves to smile and laugh and sticks her tongue out at all and sundry. Ashley and Josh take her outside regularly; she loves to ride in her stroller, particularly if the path is bumpy. When you put her down on her back, she’ll do one of two things: either try to eat her feet or roll over and try to crawl. Sometimes she sleeps through the night and sometimes she doesn’t; however, her appetite never flags.

Resting from my labors....

Ashley met her surgeon and plastic surgeon today. She will have surgery Wednesday, April 6th, to remove a large area around and underneath the site of her melanoma; the tissue removed will be biopsied at the margins to ensure that they have removed all the cancer (if not, she’ll have to go back to have more tissue removed); then the plastic surgeon will take skin from her thigh and make a skin graft to cover the wound. Her surgeon also discovered another mole on her scalp that he will remove at the same time and have biopsied. The surgeon will also conduct a couple of tests using isotopes and dyes to help determine whether the cancer has spread to her lymph nodes: he’ll remove any suspicious areas and have them biopsied: the results take about a week; if they are positive for cancer, she’ll face further surgery and additional therapies.

Her surgeon (Dr Albo of the Baylor Clinic) expects that she will take about 7 to 10 days to recover from this first surgery (she’ll have some pain and will have to protect the healing wound). She may be able to come home the day of the surgery, though she may also have to spend a night in the hospital.

Thanks for your prayers and support.

Lillian Grace Denby Update: 2/26/2011

Laughing at my dad

Lillian Grace is 201 days (6 months and just over 2 weeks) old today; her adjusted age, calculated from her due date is 2 months, 24 days. She’s been home from the hospital for 2 months.

Life at home when you are 6 and a half months old is really pretty sweet: you get to eat just about whenever you want to, and the food is customized just for you; you can sleep when you want to and keep everyone else awake when you don’t; when you get bored with your swing, you can  borrow someone’s knee for a little bit of bouncing. But life isn’t all rosy: you keep getting dragged off for various shots (she had her third dose of Synagis this week) which hurt like the dickens; or you find that your teeth are working their way up through your gums and that hurts, too. Still, it’s springtime in Houston, so you can escape the confines of your apartment and go out walking with your mom or dad — when you’ve spent most of your first six months inside, that’s a pretty exciting thing to do — so all in all, if you are Lillian Grace Denby, you are a pretty happy baby.

Talking to mom

Lillian’s great accomplishment of the past week is that she’s weaned herself off of oxygen, and is breathing only room air. She’s still hooked to the pulse oximeter at night, and for an hour or two during the day, but her oxygen saturation on room air is excellent. This means that doing things (like going for a walk) is much easier: no portable tanks to hook up and lug around. She’ll go back to her pulmonologist for a check-up in April, but she appears to have made excellent progress in her breathing. She continues to eat well and to gain weight: she weighs 12 lbs, 9 oz.

 

Bouncing

Lillian is very active when she’s awake: she can flip herself from her back to her stomach (though she can’t flip back) and skooches herself around the floor or the crib. She has a bouncer that she loves to play in (we put up a video of her bouncing here); she loves to move and to grab anything in reach. When her teeth hurt, she sucks on her wrist or her fingers or an icy teething ring. She takes a few naps during the day, but at night now sleeps for one or two four to six-hour stretches.

Thanks for your prayers and support!

Lillian Grace Denby Update: 2/14/2011

Happy Valentine's Day!

Lillian Grace is 189 days old today; her adjusted age is 10 weeks. She’s been home from the hospital for almost 8 weeks!

Lillian’s Official Stats as of Friday, 2/11:

• Height: 59.7 cm (2.6 cm gain) 23.5 in
• Weight: 5330 gm (325 gm gain) 11 lb 12 oz
• Head Circumference: 39.4 cm (3.8 cm gain) 15.5 in

Lillian Grace visited Dr Rowland, her pediatrician, for her six month check-up on Friday, 2/11, accompanied by her mom and dad. Dr Rowland thinks she is doing very well. She holds her head up on her own and sits for extended periods (supported by a friendly hand), laughs and smiles, and coos, gurgles and grunts. She breast-feeds almost exclusively and is a serious, dedicated and noisy eater. Developmentally, she is right where she should be (perhaps a bit ahead in some areas) given her adjusted age (which is calculated from her due date of December 2nd). Lillian is currently waiting on an appointment with developmental pediatricians who specialize in follow-up assessments of neo-natal infants.

Of course, when you are a baby and go to the doctor for your regular visit, you are likely to get a bunch of shots: Lillian got several, including her first flu shot. She did not enjoy the experience; and she did not much enjoy the rest of Friday or Saturday. As often happens after a flu shot, she ran a slight fever, seemed a bit congested and was pretty lethargic. Just to be safe, Ashley and Josh took her back to the doctor on Saturday morning: her lungs sounded normal and, after a careful examination, the doctor thought that she was just reacting to the flu shot. By Sunday morning, Lillian felt much better, and was back to her smiling, feisty self.

My Eyes

For the past week or two, Lillian has been sucking on her own hands and arms, on her dad’s hands and arms when she can get to them, and has been drooling up a storm. Dr Rowland confirmed what we suspected: Lillian has begun teething and in the next month or so we can expect a tooth or two to erupt. Ashley is both excited and, as Lillian’s food source, just a bit apprehensive: the girl has a powerful jaw. Dr Rowland also thinks it likely that Lillian’s eye color will continue to be about what it is now: a dark blue with hints of gray and gold.

Lillian’s breathing continues to improve, we think; her pulse oximeter was out of commission for part of last week, so Ashley and Josh limited her to three-hour stretches on room air; after getting it going again (Apria walked Ashley through the procedures over the phone), they’ve increased her time on room air gradually: yesterday she breathed room air for 12 hours with no desaturations. She will see her pulmonologist, Dr West, on April 5th to determine whether she is ready to be off oxygen full-time.

Helping mom get the mail

One of the advantages of being off oxygen is that you don’t have to be tethered via cannula and tubes to an oxygen tank: that means that when the weather turns glorious, as it did Saturday, your mom can just put you in her K’Tan sling and take you out to check the mail or to sit on the balcony or to take a walk… kind of like Lillian’s just a baby!

Some of Lillian’s nurses and friends from Memorial Hermann Southwest NICU recently commented on the blog and sent greetings her way — she misses them (as does her family) and we promise to drop by soon to visit. No small part of the miracle that is Lillian is due to the superb care she received in her four and a half months’ residence there; it takes special people to handle the needs of premature babies and their families, and the people of Memorial Hermann Southwest NICU — doctors, nurses, techs, clerks, cleaning staff — are some of the best.

Thanks for your prayers and support!

Lillian Grace Denby: 6 Months Old, 2/9/2011

Today (2/9/2011)

Six Months Ago (8/19/2010)

 

I'm 6 months old today!