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

Hospitalized for RSV, C. diff., and Pneumonia

Our clinic appointment for the next phase was scheduled for Wed, Jan 23rd, so we had the home health care nurse come over Tuesday morning to draw blood for labs. When the nurse comes over, she usually takes Molly's temperature, which ended up being 100.2 degrees that morning. She expresses concern for that and I said I would monitor it through the day to see if it got any worse. Molly had just that morning developed a runny nose and coughed occasionally, but I thought she had just caught the cold that I had the week before. That afternoon Big Sis had a dance class I needed to take her to, so I called Grandpa Dean to see if he would come sit with Molly since she was starting to look sick. I got back home with Big Sis at about 3pm, and took Molly's temperature again. It was at 101.4, so I called the clinic to see which ER they wanted me to take her to and they told me that if it was all the same to me I should take her to PCMC so that they could have all her records here at the same place. When Daddy got home at 6pm, I loaded Molly up in the car and headed down to PCMC with the expectation that they would give her a dose of antibiotic and send us home. I didn't even bring my purse, just my wallet, because I figured we wouldn't be gone for long.

When we got to the ER, I told them that she has ALL and that she has a fever, and they brought her right back to a room where they would check her out. I suppose that is one bonus of being a leukemia patient... absolutely no ER waits! Anyway, we got back to the room and they put a blood oxygen monitor on her toe, which showed us that her percentage was in the 70's (should be higher than 80%) so they stuck an oxygen tube on her face and into her nose. She did NOT like that at all! It took her a good 2 hours to get used to it! They also did a quick blood draw from her port and did a nasal swab to test for a variety of diseases, which she didn't like at all either.

Molly just got the oxygen tube put in. No likey.

After about 1 hour waiting in the ER exam room, the resident doctor came in and told me that since Molly had signs of an infectious disease she would be admitted and we'd be taken up to the Immuno-Compromised Services section (ICS - same place we stayed our first week of diagnoses). So I grabbed our coats and Molly's medication bag and we were taken to get a chest x-ray first and then up to ICS and put in a room that had a very good view of the valley. After about an half-hour in the room, the ICS resident came in and told me that Molly's nasal swab showed that she has indeed contracted RSV. She said that her labs showed that she isn't neutropenic (low white blood cells; causing very low ability to fight disease) so that was a good thing, but we'd be staying here for at least until the fever breaks. I asked her how long that would be and she said that most RSV patients start getting better around the 5th day after first showing signs of RSV, which was this day.

Here's the view from our room. I'm definitely asking for this side of the ICS if we ever have to stay here again.

So I started to try to get comfortable. I didn't have my phone charger or even any paper to doodle on, but we did have the Dr Seuss book Go, Dog, Go, so we read that a few times. That first night was tough because I couldn't use my phone and Molly was on an IV so she had to use the toilet every half-hour. Neither of us got very much sleep at all.

The next day, Wednesday, Molly's fever was still in the 102 degree range, her heart rate was in the 150's, she was still on oxygen, her respiratory rate was in the 50's, and her blood pressure was high as well. We put her on an acetaminophen and ibuprofen regimen to keep the fever down. Only the ibuprofen worked, but we could only give that every 6 hours, so we gave acetaminophen at the 3 hour mark in between ibuprofen doses.

Daddy was at home with Big Sis and they both developed stomach aches and diarrhea overnight, so Daddy decided to stay home from work. I had Grandpa Dean stop by and pick up my phone charger and a few other very essential items (my laptop for one, haha!) and drive them down here. The doctors here came in and confirmed that she had RSV and said that the chest x-ray from yesterday showed some splotches, so they suspect she's also got pneumonia and will be doing further tests for that. They put her on an antibiotic and also took a stool sample to see why she suddenly developed diarrhea.

Gotta try to be happy!

Later that afternoon, Daddy called me and told me that his stomach was hurting way too much and that his mom will be staying with Big Sis while his dad takes him to the ER at Davis Hospital. I immediately suspected appendicitis, since he had not had that yet. When he got back from the ER, he called and told me that the doctors there did a CAT scan and didn't find anything except for swollen lymph nodes, so they sent him home with some mild pain medication and instructions to just wait it out. He and Big Sis went back to his parents house for the night so they could help out with the pain. Apparently Big Sis got over her stomach ache pretty quickly, so we knew it was just a coincidence that they both had aches at the same time.

Molly's Tree of Life

On Thursday, all of Molly's vital signs were the same as yesterday; elevated everything. She stopped eating any food so they put her on IV nutrition through her port. She had a blood transfusion just before going to bed last night, so today her color was very nice. They said that her stool sample showed that she had also developed clostridium difficile (C. diff.) which is a pretty common viral spore among hospital patients, and put her on Flagyl to specifically treat that. They also said that they'd put her on a second antibiotic that will help clear up whatever is causing the fever.

Since I was still wearing the same clothes I had arrived here in, I asked for some baby-sitters from my family to come down and sit with Molly while I went home to pack some more clothes and essentials, shower, and make sure the cat was OK. I also talked to my mom about some research I had done here on aromatherapy and she sent down her diffuser and some eucalyptus oil. I had to get permission from the doctors here to use it, and the Integrative Medicine Specialist said I could, but only during very specific times so as not to irritate the other patients here. The specific times were 3-5am and 3-5pm.

I went home to take care of things, and after 4 hours or so, I got back to the hospital and relieved Uncles Ethan and DJ from their duties, organized the hospital room, and tried to start making things comfortable since it was looking like we'd be here at least until Saturday.

Daddy called me again around 8pm and said that he is still in so much pain that he is going to go to a different ER and see what they have to say. About an hour later, I was told that they were going down to McKay Dee hospital so they could do an emergency surgery on his abdomen. I didn't get many details past that, so all night I was worried that I wasn't going to see Daddy again. Molly also had a pretty rough night because of the fever and the fluids she was getting, and all the medications we had to wake her up for. I think it was very surprising that I was keeping my cool this whole time.

Friday morning, Molly's vitals were still the same as they had been, she was getting all the same med's they gave her yesterday, and I was so very tired from the lack of sleep. I found out early in the morning that Daddy was out of surgery and was recovering well. It turns out that he had an organ of sorts connected to his small intestine that a very small percentage of people have as adults called Meckel's Diverticulum. Apparently this thing is something all babies are born with, but it usually disappears soon after birth. His diverticulum was very inflamed and had to be removed. He said that he will be staying at Mckay Dee at least until Sunday.

That afternoon went just the same as it had been all week, and the fellow oncologist that we usually see in the clinic came to see us and explain that we will in fact be delaying the next phase of chemo for 1 week. So that means that she'll be starting the next phase on January 30th.

Saturday was still just like the other days. We did another CAT scan, and later Grandpa Wayne came over so I could visit Daddy in the other hospital, and so I could go see Big Sis and see how she was doing as well. The cat also got some attention.

That night I had a little break-down and maybe scared the nurse a bit. I was crying about how I was worried that Molly wasn't getting any better and we were just making her worse with all the antibiotics and other medications we were forcing into her system. I know why I was so emotional though... I track my menstrual cycle and hormones very closely and this was one of the days I predicted would be a low-hormone day, which would make me depressed and tired for a couple days. I hope the nurses here don't think I'm a nut.

Sunday, yet again all vital signs were elevated. Daddy was discharged from the hospital in the early afternoon. I should mention what activity Molly has chosen to keep herself occupied during the day... Princess Merida in the movie Brave. I'd say we watch that movie probably 4 or 5 times a day here. She even has the verse that the witch says will break the spell on the queen memorized. So do I. "Fate be changed. Look inside. Mend the bonds torn by pride." Tada! Oh, and I officially want the Brave soundtrack. I'm hooked on that music.

The resident doctor here came in that afternoon and said that the newest CAT scan definitely showed that Molly has pneumonia, and I asked for her best guess on how long we could be here. She said that patients with leukemia usually stay for up to two weeks. So that's what I am expecting now... a very long hospital stay with nearly nothing productive in our normal life getting done. At least I have my laptop!

Sunday night was the first night that we were able to keep Molly's temperature down long enough for her to sleep 4 hours at a time. We still had to wake her for medications and to check her blood pressure at midnight and 4am, but I'd say both she and I got very good rest that night!

Feeling a little better!

 On Monday, things were looking the same in the morning, but everything took a turn for the better around noon. Her fever went down, I gave her a bath in the big bathtub here and when we got back and hooked her up to the monitor, they found her oxygen level was staying up so we didn't put the tube back in her nostrils. Grandma Jayne drove Daddy and Big Sis down here so Daddy could bring me one more change of clothes and the hair scissors, and we gave Molly a very extensive haircut. I think it looks absolutely adorable. I was afraid that she wouldn't look like herself, but in fact, the haircut makes her look even cuter, and her very distinct facial expressions are amplified a hundred-fold!

I talked to my mom about another essential oil that could help Molly get better, and she also gave me a homeopathic remedy to give her once or twice. The Integrative Medicine Specialist gave me information on how these additional treatments could help, and also how they could hurt. Armed with this information, I decided to go ahead and use the remedy and essential oils. Also, the Infectious Disease doctors came in and told me that in addition to RSV, they found that she additionally had Coronavirus. So that brings the total illnesses to four. Fun stuff. But she's finally getting better!

Today, Tuesday, Molly is looking very well! Her temperature has been normal for more than 24 hours now. Her heart rate and respiratory rate are very close to normal. She did have to go back on oxygen overnight last night, but she's back off it now that she's awake. The resident doctor came in and told me that Molly is looking very good, and she expects we'll be able to be discharged in a couple days! That is by far much better than 2 weeks! So, all we have to do is get Molly to the point where she can go overnight without oxygen, and she needs to get her appetite back again. She hasn't eaten anything yet, and I keep trying to get her to drink PediaSure, but she still needs the nutritional fluids through her IV port. The oncologist says that we'll probably still start her on the next chemo phase (Interim Maintenance I) tomorrow, but we'll likely delay the methotrexate portion of it 1 week just because of Molly's recent illnesses.

Well, that's that. You'll get another update probably in a week or two, after we've had another clinic visit and chemo treatment. Thanks for reading!

P.S.

If you're wondering about how to donate to the Molly fund (we found out our deductible was misleading and we actually have to pay almost $12,000 per year before the insurance covers anything), we have this nice little yellow-orange button at the top-right of this blog page under Molly's picture that says "Donate." We really really really appreciate everything that has been donated so far, and the time given by several people taking care of a few things for us.

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

Phase 2 Consolidation Clinic Visits

On Jan 2nd we were schedule to visit the clinic at 8am, and then have Molly's lumbar puncture done in the OR at 10am instead of in the RTU because the RTU was completely booked that day. So we get up at a very early hour, made sure Molly didn't eat or drink a thing, and drove up to PCMC. We had to visit the Operating Room check-in first and wait for 30 minutes to be "processed", along with several other children and their parents. Then they sent us back up to the clinic to have labs drawn. After labs, we went back down to the Pre-OR waiting room where they gave Molly some hospital jammies to wear and had me take out her earrings. We got taken back to the OR waiting area where they had several beds and chairs and TVs and some video games. Since I expected we'd only be there for a few minutes, I held Molly in my arms and sat in a rocking chair while she played on my phone. 

Molly fell asleep eventually and the nurse there came to our chair and told me that they expect we'll be taken back at 11:15a. So we waited. And Molly woke up. And wanted juice. And wanted goldfish crackers. And cried. Because she couldn't have anything to eat until after the procedure. 

I'm trying to be a happy mommy with a very unhappy Molly in the OR waiting room.

It got to be 2pm and I finally went to the desk to ask when we were going to be brought back. Of course they didn't know, so they called several people and finally told me that there was one more person ahead of us, and asked if Molly needed to be given anti-anxiety medicine through her port because I couldn't go back with her; they would be carrying her back without me. Well I thought she'd be ok, and I didn't want them giving her any unnecessary drugs anyway. Around 3p, they took her back (and she cried so very much when I put her in the OR nurse's arms) and I went to the parent waiting area, where I waited for only about 40 minutes until they came and told me Molly was awake from anesthesia and I could go see her.

In the post-op recovery area, Molly was on her 3rd bottle of juice, and asking for more. They were so impressed with how thirsty she was (what did they expect? She had waited ALL day for something to drink!) and we were told we could leave as soon as they could figure out how to de-access her port. Seriously? These people see all kinds of patients everyday, and they took 20 minutes trying to "learn" how to take the needle out of her chest (which I had done before and tried to explain it to them myself). They also had to wait to find out what kind of anti-clogging medication to put in her port before taking the needle out (which I had in my bag right there, but they wouldn't listen to someone so unschooled as me). 

Molly with her juice sippy they gave her in post-op.

Needless to say, I was incredibly disappointed with the way everyone in the OR department handle everything. I hope I never have to go back there again.

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On Jan 9th, we were able to get a spot in the RTU. We had the clinic visit at 10:30a so Molly could have some juice at 9am, but I didn't have any juice to give her so I did some researching on liquid diets and ran across a forum for colonoscopies where I learned that if you take a light-colored jello that's not red and mix it as usual but don't refrigerate it, then it is a good substitute for apple juice or water. So I found way in the back of my cupboard some peach jello, and gave that to her. And the doctor at the clinic said that was fine. 

This week at the clinic, the nurse came in to do the port poke and I had Molly laying down on the bed. I held both her hands as I usually do when they are going to do something she'll likely not enjoy, and she just sat there and watched them the whole time! No crying! The doctor and the nurse agreed that this was quite unusual and I should give seminars to parents on how to calm children down. I realized this week that I had created somewhat of a comfort routine with Molly; holding both her hands, and diverting her attention with songs, and questions about what Big Sis might be doing at grandma's house.

We learned that the RTU had a cancellation and so we got to go down early. Molly insisted on walking down the hall instead of riding in the stroller, so I let her. And the nurses all fell in love with Molly in her pigtails and footsie pajamas, waddling into the RTU.

This week Molly is so much happier than last week!

 While Molly was just waking up from the lumbar puncture this week, one of the nurses came in and expressed concern for a bruise she saw behind Molly's ear where her earring sits. I explained to the nurse that it wasn't a bruise, just a mark from the earring back because it probably has nickle in it. I told her it would wash right off, just like if you had a ring from the quarter machine which left a green mark around your finger. I also got a phone call a few days later from a very concerned oncologist himself who said I shouldn't let Molly sleep in her earrings because it looks like they are bruising her skull and he was worried about possible infection. I explained that it was just discoloration, and then went right over to Molly and took an alcohol pad to the "bruise" and it washed right off. Hopefully I don't get comments on that anymore, as I will try to keep it washed.

We've got 2 weeks off from clinic visits before the next phase. I am still giving Molly Septra on Mondays and Tuesdays to prevent pneumonia, and I am giving her 6-MP (mercaptopurine) every night at least 1 hour after she eats dinner. All her lab results have been excellent, everything is very promising. 

We changed our diet, and Big Sis hates it. She doesn't like the whole wheat spaghetti (neither do we... so we're not having that again) and she doesn't like that she has to eat veggies now. Today we had turkey burgers and roasted organic summer squash. I think we all liked the turkey burgers even better than beef burgers! And I finally tried making rice and steaming broccoli at the same time in my rice cooker... that turned out too easy to fully express how pleased I am. 

I am trying so hard to make this life more normal for myself and my family, but our homeschool and chores are falling behind, I get sad sometimes because I wonder if Molly is just going to die of cancer anyways, and I get sad because we were planning on buying a piano in 1 year, paying off all our debt in about 3 years, and building a house in 5 years, but those all have to be pushed back an unknown amount of years because of this ugly creature dancing with Molly. On my low days, I just want to lay in bed all day and exist without responsibility or desire. It's difficult. But I carry on.

P.S.

If you're wondering about how to donate to the Molly fund (we found out our deductible was misleading and we actually have to pay almost $12,000 per year before the insurance covers anything), we have this nice little yellow-orange button at the top-right of this blog page that says "Donate." We really really really appreciate everything that has been donated so far, and the time given by several people taking care of a few things for us.

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.