Radiation half way done

Madeleine has had two full weeks of radiation clinic- no eating 6 hours before the treatment, getting up before everybody and silently leaving the house, westside traffic, find parking, fight for a spot in the elevator, wait for anesthesiologist (sometimes), carry our precious girl into the Linac, then hold/play with her till she feels the sedation medication. (If you've ever had the unfortunate experience of holding a small pet being put down, this is very comparable; no matter the frequency, it still feels & looks the same). I rarely watch her face as she goes under just because I literally feel sick to my stomach. I gently close her eyes with my hand give her a kiss and place her little body up into the head pieces made especially for her, and leave, heading back to the exam room. She's usually out of my sight for about 20 minutes until I hear the heart monitor coming down the hall. Then sit and wait another 20-30 minutes for her to wake up from her induced nap. Madeleine wakes up quickly, even moreso than the average afternoon nap- she usually manages to get her knees under her and her face on the sheet in 7 seconds and the Nurse or I better be quick to stabilize her before she rolls to one side as she comes to. She then will nurse before we leave, sometimes falling back asleep in the comfort of mommy.

On Tuesdays our day is 3x as long; after radiation clinic we go upstairs for hem/onc clinic and labs. And that's a whole other story of hurry up and wait. By the time we get home Annalise is usually out of her bed and in mine, waiting for us. She comes running to say hello, "you're back" and give us hugs and kisses, one of my favorite moments, though typically short lived. As a family we're all getting adjusted to yet another new normal, before it changes again in December.

sisters 11/8

Dr Lazareff came Friday morning before treatment to look over Madeleine. He said he's really not concerned about the few things we have noticed, such as her eyes wide open or tilting her head backwards to see. She also still has the minor paralysis on the right side of her face. It's not terribly noticeable unless you know it already. There's a discrepancy over what's causing it, though we've talked it over and decided it's of little significance and best to let it lie until after the treatment is over. She is showing signs of irritability, moments where she is really ticked and not even us holding her relaxes her. She has just recently started eating less, both solids and nursing, though it's something we've expected, the loss of appetite. She started the anti-nausea med last week and that has totally controlled her vomiting. 

The hardest part of this treatment is probably the lack of patience we all have for the necessary parts of our every day. It would seem as though the day would be easily planned: radiation in the morning, drive home,  clean the floors, get everybody fed, clean up kitchen, naps (if we're lucky), clean the floors, prepare for dinner and maybe some sort of laundry or other cleaning. Instead, radiation is always dependent upon the group of patients rather than the individual; waiting on the docs; patience in the traffic (405 is a nightmare), etc. Each of Madeleine's feedings is a production that she and I both have little patience for, though I think we're both trying. She hates taking her medicine anymore, the chemo must really taste yucky even though it really doesn't smell. She has been experiencing itchiness all over her face and rubs quite a bit even with moisturizer as well as during meals so we basically bathe twice a day = more time. Saturday and Sunday she gets a break from the chemo and seems to be when she is the sleepiest and most fatigued; she must be catching up from the beat down during the week, though she really has been handling it well. I think all the time how much harder this could be if she could sit up and yell at me what's bothering her, how everything makes her feel, etc. 

We've got another 13 treatments. Not sure yet exactly what the plan is after that. Keep praying to God this treatment works.

All's Well

After the antibiotics on Friday, we were allowed to go home because Madeleine's ANC is perfect- meaning her immune system looks good and is fighting the infection so she isn't sick. This course of antibiotics will give her the extra punch she needs to fight it off and keep it from getting worse. She is very happy and active like usual. It was an extremely stressful day on Friday though, thinking we might have to admit her to the hospital and working with the insurance company and the home health. For now, all is well and we're taking it one day at a time. Today the nurse came, cleaned her site and changed the dressing again (this is typically done once per week; she's had 4 dressing changes this week) and gave her the antibiotic infusion. We had a friend over this morning to play.

She will have another dose of antibiotics tomorrow, and if the dressing is messy, we keep changing it. We're back to the hospital on Monday for Radiation treatment #3 and Tuesday she'll also go to clinic for labs.

Thank you to everyone who prayed for little Ian Adams. His family posted the following update.

getting better~! by friendsoftheadams Ginger reports: "Ian's viral panel came back positive for the flu virus. They have discontinued antibiotics and will observe for 24 hours to make sure the fever doesn't come back. The plan is to discontinue fluids tomorrow. Ian & Papa Steve He is still off the oxygen and Papa Steve (who was with him today so Joey could go to work) reports that he is eating well, napping well and happy!" Thank you everyone for your prayers and encouragement!!

Quick Update

This morning's radiation #2 went fine, exactly as planned. However, her central line site looks infected - major bummer. We've been stuck for blood and site cultures, dressing and cap changes, and a 24-hr antibiotic infusion. Hopefully the insurance comes through for us and we can get home infusions over the weekend. If they can't, or if Madeleine develops a fever at any time, we have to be admitted. Praying this antibiotic works and prevents her from getting ill!!!!!

Radiation #1

What a day.... for many reasons not directly related to Madeleine's treatment! Lately Madeleine has been waking very early each morning, anytime between 3am and 7am (just for perspective, this is not particularly a family of early risers; we typically begin our day around 8:30-9am).

playing at 6am

The morning after Halloween and getting to bed around 11:30, she awoke hungry at 3am.....and didn't go back to sleep without a vibrating bouncy chair and baby Einstein until 7:30. 7:30!! I was afraid to go back to sleep and miss the alarm.

We finally got to the clinic and I carried her into the Linac  and held her in my arms as they prepped her for the sedation. She talked and stared inquisitively at the therapists chatting with them as the anesthesiologist began administering the propofol. The second she feels that medication she practically jumps off the table clinging to me and vocalizing whatever it is she feels. Her head begins to roll a little bit, her eyes get heavy. Her mouth slightly hangs open and she squeals just a little. As her eyes roll backwards with her head movement, there is something very difficult to put into words. In the past we have not accompanied Madeleine into the procedure room to see this happen. Now in radiation, I've seen it twice, and it is hard to witness. 

I had a hell of a time trying to get her oral chemo medicine while she was in procedure. I went back to the clinic, knowing she would be finishing up, to find her already out. One of the nurses was checking her over, and noticed the dressing on Madeleine's chest covering her central line insertion site looked a little like muddy water- a potentially very bad thing. The next 20+ minutes, between the two nurses and I we removed the dirty dressing, cleaned the heck out of it and replaced the clear covering. Unfortunately that was not the end of it; Madeleine was sent to see a doc as well as a chest x-ray to ensure the central line has not moved inside her body. Tomorrow morning we'll change her dressing again while she's still sedated and replace it with a gauze dressing. There are pros and cons to this: the site will air out a little bit and we'll watch the skin very closely to see if the irritation clears up, gets worse or what. If she comes down with a fever or shows puss from the site, it's fairly guaranteed we'll be admitted to the hospital for possible infection management. The bad part of this dressing is that the site is more susceptible to infection and has to be cleaned and changed every other day. Madeleine hates having her dressing changed, as do most children. We finally left the hospital about 3 hours after scheduled, extremely tired. We came home, had some lunch and played with our toys before taking a good nap.

Friday is radiation treatment #2 and we'll stop by quickly to see her doc before the weekend. All next week she begins around 7am, and has her check-up and blood work next Tuesday.