Well, the 19th was Madeleine’s 10 month birthday. As I mentioned before, I missed her 9 month birthday photo because of all of the craziness surrounding her birthday. 😦 I managed to get this one in, a day late, but that’s alright. Close enough. You can see her 8 month birthday post here.
As of her appointment this morning, she is weighing in at 19 lbs 11 oz (naked!!) and 27.6 inches. She’s up a little over a pound and a half since last month’s weigh in. Her blood levels were all on the lower side today (yes, her ANC level has FINALLY come down, but she got another Nulasta shot today, so we expect that to skyrocket again). I was very concerned after yesterday. She is no longer moving again and cries when you adjust her position or manipulate her legs at all. So, today, while we did not have a clinic visit scheduled, I forced the issue and told them I wanted her seen. We were lucky to have her seen by Dr. Matthews, one of the attending physicians.
What did we learn from that visit? Well, we got the first bit of not good news since we first received the “your child has a tumor and we think it may be cancer” news. Dr. Matthews is the first doctor who has told us just how bad her spinal compression really is. I mean, we knew it wasn’t good, but we had no idea it was this bad. She said that Dr. Park, our attending assigned to our team, said it’s one of the worst scans she’s ever seen. 😦 She said Dr. Park is very, very concerned about her ability to recover. They are finally listening to me, since she examined her and saw just how bad her movement is. She also saw how Madeleine would cry when her legs were manipulated. But Madeleine didn’t cry every time she had her legs manipulated, so Dr. Matthews said this wasn’t really consistent with tumor pain. She said tumor pain would be consistently painful. What that means her pain stems from, we don’t know.
Here’s the game plan for this weekend. We are upping her Dex dosage back to the 2mL/3x per day. We had tapered down to .25mL/ 2x per day. This will be just for the weekend/until she can get in for an MRI, so the taper is on hold for now. We have also upped her Neurontin (nerve pain medicine) dosage to 1mL/ 3x per day rather than the 2x per day. We’ll see if maybe she’s having nerve pain. We go in again for a clinic visit with Dr. Abicoff (the fellow on our team) and blood draw on Monday. We currently have an MRI scheduled for Wednesday at 9:45, but are on the wait list for a Monday or Tuesday slot.
Dr. Matthews told me that the likelihood for surgery is not good, simply because it creates so many other issues when the child is going through chemo at the same time. She also said that they would not do radiation unless the tumor was still growing – just to get the tumor under control – however the likelihood of that happening was very slim. Neuroblastomas tend to respond very well to chemo, so it would be very strange for the tumor to still be growing. For now it’s just a wait and see game. I hate the wait and see game.
So, what’s been happening this month? Well, you’ve been privy to pretty much everything. Most things are posted here about her doctor’s appointments. A lot of her developmental stuff has gone backwards with the movement being hindered.
- We have tried working on self-feeding, but Madeleine has not yet gotten the hang of it. She’ll pick things up, and then either flings them or drops them again without attempting to put them in her mouth.
- We have also been much more adventurous with her foods. She has tried lasagna (two different kinds), curry, muffins, bread, rice, yogurt, cherries, peaches and bananas. She liked all of them! But the curry did end up getting a little too spicy for her.
- We started physical therapy and have been trying to “exercise” a little every day. Sometimes when I try she cries, so we stop and try again later. She’s also been wearing her leg braces like a good girl.
- Her stranger anxiety has dissipated almost entirely – except when other people try to hold her. She used to get upset if strangers got in her face, but she’s adapted pretty well since she has so many people in her face all the time at the clinic.
- She has learned to high five!
- She has learned to wave hello and goodbye – which started with her waving at herself in the mirror, and now she’ll wave at other people. It is so cute.
- Going along with the learning to high five, she has also learned to high “10” and do patt-a-cake with both palms up for me to “patt” against. Again, so cute. She adores patt-a-cake these days and squeals/grins really big.
- We are still reading regularly and she still loves her books and turning the pages. She’s even getting better at turning the paper pages without trying to crinkle/rip them every time.
- Because she has gained weight so rapidly, we went shopping for her “big girl” car seat! She is now the proud owner of a Graco MyRide 65, which allows her to be rear-facing for up to 40lbs. YAY! We installed it in the car yesterday after it arrived and she got to ride to the hospital in it today. She looks so cozy and happy back there, I still need to get a photo of her in it. I’m jealous and want a seat like that for myself!
- We now cruise around with her in the Ergo when we go out and about, which she seems to like.
That’s all I can think of for the time being. So now, for some pictures! Not a ton, because I’ve been posting most of them in my updates, but a few.
Happy 10 month birthday, baby girl!