Maintenance, round 1 of 8

Hey! We're in Maintenance!

On August 14th Molly had a lumbar puncture scheduled for methotrexate, and also vincristine into her port. It was pretty routine. I am looking forward to these routine visits! It's going to be good!

It's a good clinic visit! Two thumbs-up!

 At home we gave Molly the steroids (dexamethasone) for 5 days (she tolerated that pretty well, no big fits were thrown), and we also gave her mercaptopurine every night and methotrexate every Thursday night (except the first week, since she got methotrexate into her back at the clinic). Of course we are still giving her the prophylactic antibiotic Septra every Monday and Tuesday. Sometimes I get asked by a family member or friend what treatments Molly is on, and I give them the list, and they are shocked a little at how I am able to keep them all straight. Well, I've gotten quite used to it I guess. That's how. These medications are like our family members now...they are always there and we treat them like we love them, even though sometimes they can be a pain in the rear end!

I love watching this kid sleep! Almost as much as when she's awake!

On September 11th and October 9th Molly had clinic appointments just to go in and have labs drawn and get vincristine into her port. Those also went very very well. The lab results keep coming back great and there's no need for transfusions or anything. At the September visit, the doctor had us test Molly's stool again for C. Diff. It was positive. So we had to do a round of Vancomycin to try to rid her of the problem. I have also been giving Molly certain probiotics that is supposed to help a lot with this antibiotic-caused bacteria in her intestines. We've tested again recently and it has not gone away yet. We do not qualify for the research study that is going on right now for a more potent medicine because Molly's C. Diff. symptoms are relatively mild, so we'll just keep on giving her the probiotics until she's off any antibiotics and hope that we can knock it out then with one of the lesser potent drugs.

In mid-October we participated in the LLS Light the Night cancer walk. One of Molly's awesome great-aunts helped us get a team together and basically did all the work for us! All we had to do was show up! That was a fantastic night, and it wasn't even that cold...We had a ton of fun though.

Our Light the Night team. Molly's Minions.

Big Sis the Purple Monster and Molly the Ladybug (and some random old lady in gym shorts...)

 Every 12 weeks is the start of a new maintenance round. I'll try to update the blog at each new round, unless something big changes, it which case you'll hear from me earlier (pray that doesn't happen...). Life is settling down and we are able to get into regular routines that keep us busy, so updating the blog is now something I have to schedule, rather than just do when I am bored.

Interim Maintenance 2 Clinic Visits

On Wednesday June 19th, We had the first clinic visit of the 2nd Interim Maintenance phase. Molly had to have a lumbar puncture in the RTU for this visit, so she had to skip breakfast that morning, which is one of her least favorite things to do. To make it easier on her, we have Big Sis sleep over at Grandma's house the night before, and Mom and Dad get up early to eat breakfast before Molly wakes up. That way there's no food taunting Molly in the morning before we head out for the clinic appointment.

Molly always gets to play on Mom's iPod when we go to the clinic. Her favorite game is Monkey Preschool Lunchbox.

On Tuesday June 25th, Molly woke up with a fever. Of course Mom was extremely worried that we'd have to stay overnight at PCMC again, so she called the oncologist and asked if we could just go over to the local ER and have them do the blood tests and if something turns out positive then we'll head down to PCMC. Thankfully they said that was fine, and we spent most of the day at the local Emergency Room. The tests were all negative and we got to go home with instructions to monitor the fever and if it's still there in 24 hours then we go to PCMC.

Big Sis got to stay with Molly while we were at the ER for Molly's fever. Molly really liked having her there.

 That Friday, Molly had a scheduled clinic appointment that went really fast because she just needed methotrexate and vincristine into her port.

In the clinic rooms they have these neat toys attached to the walls that the kids can play with while waiting.

The Child Life specialists at PCMC are absolutely wonderful! They've gotten to know Molly so well, they always remember to have a baby doll ready for Molly to play with. I think Molly's aunt McKenna would be a wonderful child-life specialist, if that's something she wants to do.

 Our Independence Day celebrations were great...we went to the city park and they had bouncy houses there. Molly didn't go on them last year, but she braved them this year, and loved it!

Also, Molly has started learning her letters and sounds on the computer. Starfall.com is the same website Big Sis played on when she was little to help learn the letters and sounds, so she is usually right next to Molly helping her figure stuff out.

On July 8th we had another easy clinic visit, just like the last visit. We both really love these quick visits! We're pretty much in and out on these days.

Molly's so used to the blood pressure routine that she's to the point where she's telling the nurse what to do next, which buttons to push, and taking the cuff off before the nurse even notices that the machine is finished.

 July 17th was a no-food RTU lumbar puncture visit. When we do the RTU, I carry her into the procedure room when the anesthesiologist lets me know they are ready, and I sit her down on the bed and they hook up her port to an IV. Then they take a syringe filled with propofol, which is white in color, and hook it to her port through the IV line. She starts to feel the effects almost immediately and somehow knows that she'll be waking up shortly without Mommy, so she fights it a little. Then after she falls asleep fully, I go wait in the hall and about 30 minutes later a nurse comes out of the recovery room door and tells me that Molly is waking up and ready to see me. I go in and help her wake up more, we give her something to drink (usually apple juice) and maybe some chips, and then de-access her port. They send us home with instructions not to let her fall asleep in the car with her head down on her chest, and not to let her do any high-coordination activities for 24 hours. After our RTU visits, we usually go to the hospital cafeteria and grab a doughnut and some juice.

Sometimes Molly likes to sit on the bed in the clinic room, but usually she only wants to sit on Mom's lap the whole time.

Friday July 26th was the last visit for this phase. The visit went so fast that I didn't get a chance to take any pictures! We got into the clinic room and almost immediately they came in to take her blood for their routine labs and then right after that the doctors came in to check her, and then while the doctors were in there the infusion nurses brought her chemo (methotrexate and vincristine) in and administered it right then and there! It was so fast we were out the door about 40 minutes after arriving.

We had almost 3 weeks off until our next appointment, which starts THE MAINTENANCE PHASE!!! The doctors told me that the only count-dependent part of the maintenance phase is the first visit, and then after that it doesn't matter how low her ANC counts go, we still plow through to the end. The only thing that can set us back is if her labs come back with something abnormal like her red blood cells and platelets suddenly drop. I don't think that's likely though, because she's been doing so well on her treatment so far. So here's to the next two years! I'll be updating after each visit (every 4 weeks) so watch for that! There will be another post very soon for the details on the visit we just had this week.

Delayed Intensification Part 2

We made it through the whole Delayed Intensification phase!

On May 9th, Molly got a fever and she was admitted to PCMC for 3 days. She had wide blood pressure (to much distance between diastolic and systolic numbers) so she got to spend a night in the PICU, then another two nights after that in the ICS. Turns out this was also the day her head decided to let go of all her hair! By the time we got home Molly was left with only a fine peach fuzz all over her scalp, and a very bare spot on the back of her head where she rubs while asleep. This picture below shows it almost finished falling out.

May 22nd was a clinic visit for cyclophosphamide chemo through the port and methotrexate chemo through lumbar puncture. This visit was a week delayed from originally planned because Molly's counts were too low for chemo last week.

We got sent home from this visit with an at-home oral chemo called thioguanine and a port chemo called cytarabine. We had to give her oral chemo to her for 14 days consecutively, and port chemo every day for 4 days, the 3 days off, then 4 days on again. For the port chemo, I had to wear the chemo gloves and make sure that the girls didn't try to play with the syringes. All the used syringes and the gloves had to go into a special chemo waste bucket when we were done.

On June 5th Molly's labs showed counts that required a blood transfusion, so we went in the next day and spent the morning at PCMC refilling Molly's tank. She did very well with that and had no adverse reactions to the blood she received.

My laptop is in pieces right now, and so I am unable to access the pictures I transferred from my camera. Eventually I will be able to get the pics from this phase up and we can all enjoy the Molly-face even more!

Next we start with the Interim Maintenance II phase! 

Delayed Intensification Part 1

I can't believe we're almost done with the "intense" and "complicated" treatment! By almost, I mean we have another few months left, but the worst is behind us (as far as I can tell). Then we move into the very long Maintenance process (24 months long, assuming there's no hospitalizations and relapses).

Molly finished off the previous phase with no hang-ups. She was able to get through all the increased doses of methotrexate just fine without any mouth sores.

This is what we do at clinic check-in. Weight, height, and blood pressure.

We are now almost to the half-way mark in the Delayed Intensification phase. The doctors tell us that this is the hardest phase for most children, next to the very first phase (remission induction) of course. We had 7 days on steroids, then 7 days off, then 7 days on again. That finished yesterday, and I am so looking forward to my Molly being happy again.The last time she was on steroids she got very chubby, very irritable, and craved tomato products (ketchup, spaghetti sauce, etc). This time around she didn't get as chubby, but she did get very irritable again and her craving is cheese products. All that cheese has made her poop soft like peanut butter, and she can't hold it in as well, so there's been quite a lot of frustration as far as that goes.

Day 1 of this phase was a clinic visit. Molly had a lumbar puncture for methotrexate, and also vincristine and doxorubicin (a new chemo drug for her) into her port. That visit went very well, but it was an afternoon RTU appointment which meant that Molly had to go all morning without food and that made her very upset.

Molly in the RTU recovery room after waking up from the anesthesia for her lumbar puncture.

Day 3 I was in Vegas for a bagpipe competition, so Daddy got to take Molly in for an hour-long chemo infusion (pegaspargase) into her port. I hear that went well... they ate some hospital food and watched a movie while they were there.

Day 8 & 15 were clinic visits. They were both quick visits with just vincristine and doxorubicin into her port. Her labs are coming back with good results every time we get them taken, so we're rather happy about that.

This was taken in the infusion room where they push her chemo into her port.

We have an RTU appointment for Day 29 (May 15th) and then no clinic visits until Day 1 of the next phase, which is 29 days out again. This clinic visit coming up on the 15th is a count-dependent visit, which means that they have to take labs the day before and if her ANC count is too low then they will delay the visit a few days or until her counts come back up. Molly was a little pale yesterday (the nurses told me to expect that) but today she's got a little more color so if I had to guess, I would say her counts are improving and we'll be able to have the next appointment on the day we expect it.

The oncologist keeps telling me that Molly is likely to be hospitalized for a fever or some other illness sometime before the end of this phase. I hope that is not the case, but I am prepared for it. I have a list of things I need for her hospital stays, which I'll share here in a second.

Molly's losing her hair again! She's got a small bald spot on the top of her head, and a big bald spot on the back where her head rubs against her pillow while sleeping. I'm not sure how much she'll lose this time... we'll just have to wait and see.

Molly's getting so independant! She got herself a bowl, poured herself some cereal, and brought the bowl and milk to me so I could pour the milk.

Hospital 2< days overnight bag

Molly:

Pink blankie and Frog blankie

Tiger stuffed animal

Owl Light and charger

Change of clothes

Pajamas

Extra underwear, socks

Pull-ups

Wipes

Comb

Toothbrush

Chapstick

Books

Puzzles

DVDs in travel case

iPod and charger

Water cup

Diffuser & Oils

Medications

Stroller

 

Daddy/Mommy:

Changes of clothes, socks

Sweater

Scarf and hat

Laundry Detergent

Feminine Hygiene products

Toothbrush and floss

Ibuprofen

Makeup

Face wipes

Un-petroleum Jelly

Chapstick

Comb, hair ties, and mirror

Hand lotion

Hand Sanitizer

Nail clippers and polish

Phone and charger

Laptop and USB drives

Calendar

Notebook and pen

Camera and batteries

Crochet/Knit project

Reading Material

Headphones

Snacks

Gum/Mints

Water cup with straw

Reusable shopping bags

Cash for vending machines

P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered

Interim Maintenance 1 Clinic Visits

I apologize for the big space between posts. It's been pretty busy here. I've been substituting on some paper routes (which happens at 1am, so my days are really groggy), and we're preparing to move to a bigger apartment 15 minutes northward (which will happen this weekend).  Here's what happened since the last post:
 

Molly decided to explore the clinic room this time. She found out how the water works!

We finally got some good labs on February 19th, which let us go in to start the next round of chemo on the 20th. That was a total of 4 weeks delayed. I took Molly in and she did really good with everything. She remembered what to do when each doctor came in. The Child Services gal came in and Molly immediately asked for the baby doll and play doctor stuff to play with. The nurse came in to draw blood and Molly got her port cap ready for the nurse to clean. Then the Oncologist (the one that came to see us the very first night in the ER in November) came in and Molly immediately shrunk into herself and hung her head the whole time he checked her out (I don't think she likes him that much, though he's very very nice). After being checked out by the doctors, we went back to the infusion room and had vincristine and methotrexate pumped into Molly's port, and then got to go home!

On March 1st we had another clinic appointment. Everything was just like the first visit of this phase, except they are raising the dose of methotrexate each visit. Molly doesn't really get any side effects from the medicine except for an incontinence issue we have for a couple days after each clinic visit. I asked the nurse about it and she said she can't think of any patient having that problem, so it may just be something that has to do with Molly reacting emotionally to the visits.

March 11th was the next clinic visit. Same drill, same medicine, increased dose on methotrexate. One of the side effects of methotrexate is decreased appetite, but Molly has been eating pretty well so far. It's only about one meal a day that she doesn't want to really eat.

Our next appointment is on March 21st. Molly has vincristine and methotrexate into her port again, and they are also going to do methotrexate into her spine with a lumbar puncture in the RTU. We've been spoiled the last few visits because they were so short, but this next visit will be around 4 hours long.

Molly's hair was growing back, but now it's thinning out again because of the vincristine. We have two more clinic visits with vincristine doses this phase, and then looking forward 9 doses periodically between the middle of April to the middle of July. After that she's pretty much done with that drug and her hair can start to grow back.

P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered

Quick update for the long delay

These last few weeks have been pretty relaxed at home, but stressed at the same time when you take into account the waiting we've been doing for Molly's ANC to reach a level high enough for her to (1) get off of antibiotics and (2) start chemo treatment again. As of Thursday afternoon, it was at 600, which is above the number it needed to be to stop the antibiotics and de-access her port. But it needs to be at 750 in order to start chemo again, so we're still waiting. The Home Care nurse is coming over on Tuesday morning to take blood for labs again, and we're crossing all our fingers and toes that the ANC will be high enough to start chemo treatment again.

Normally I would be thrilled to have 4 weeks off from the weekly clinic visits, but this is hard on me because I am so worried that the cancer cells will have time to build up again and we'll have to start back at square one. Sigh, whatever happens, I just have to keep calm and carry on I suppose. There's no quitting for us.

Me and Molly's Daddy watched the movie My Sister's Keeper (2009) last week and it kind of hit home with us. Not the part where they had another child to use as a donor to keep their daughter alive, but the part where the mother did all she had to and all she could to keep her daughter healthy as long as possible. If you haven't seen it yet, ignore the remainder of this paragraph; there be spoilers ahead. Anyway, if Molly gets to the point where she really would have a better life if we let the cancer take her in it's own time, I hope that I can let it and let her have a happy {however long she has left} instead of taking my efforts to cure her so far that she has to resort to planning her own death. And I hope that the point at which that situation might become true is very clear so we don't have to dance around it forever with feelings of guilt.

P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered

Postponing the next phase

We got to go home from the hospital on Thursday January 31, but Molly's Absolute Neutrophil Count was still too low (300 - normal is about 1500 for cancer patients, and 3000 for healthy people) to take her off of the antibiotics, so she got sent home with her port accessed. She also had to take the medication for the c. diff. for another week. A low ANC means that she is at a very high risk of catching infectious diseases or getting an infection from open wounds.

We were hoping her ANC would come up so we could de-access her port and stop giving the antibiotics (I think she might be getting a yeast problem because of the meds) but the labs from Monday (Feb 4th) showed that her ANC went even lower (100), so it is apparent that we'll be giving her the cefepime through her IV port 3 times a day for at least another week. The pharmacist that sends us the meds told me that he thinks her ANC bottomed out and it will be rising pretty quickly now. We have labs scheduled for next Tuesday, and that will tell us if we can discontinue the antibiotics and start the next phase of chemo.

P.S.

Our family and friends are such great people! We are astounded at the level of support you all have for us! Thank you so much! By the way, Daddy is recovering just fine from his abdominal surgery. He's still sore and can't get comfortable when we sit and watch TV, but he's back to sleeping normally. It'll still be a few weeks before he can help with carrying kids around, but that's OK because we can't go anywhere with Molly's ANC so low anyway.

P.P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered