Things Change

I am just so proud of Meredith. Last week, the night before chemo, Meredith said: Tomorrow, I am going to sit very still so the butterfly doesn't hurt as much. As I have described, the butterfly (port access) is very traumatic. Try as I might, I could not get her to sit still and we end up having to hold her down and it is a terrible situation. A few times ago, they had to bring in some reinforcements. Maybe this made the difference, because last week, she did an amazing job. She sat so still and I was able to hold her hands just like we were taking a nice walk. It was really wonderful and most importantly, it was best for her.

She has been tired a lot lately and only went to school for a few hours 2 days this week. We have been laying low. She spent the afternoon with her favorite little cousins, Layla and Hudson and had a great time. She has a short chemo on Tuesday and then another long chemo next week. The long chemos have been affecting her harder lately, so our fingers are crossed that it goes easier this time.

Thank you all for the support. Just a simple question like: how are things in your house, makes such a difference to me. It is really wonderful to have people who care. I am so very thankful.

Beads of Courage

For the most part, things are going OK with Meredith. We are struggling with two main things. First, up until recently she really did not want to go to school at all. We worked through this mostly by me sitting in the back of the Kindergarten class. It has been an interesting experience for me. I cannot believe how much kids learn in Kindergarten. I am thoroughly impressed. This week she went for 2 days and I picked her up before lunch. She had a great time. When I got there yesterday, she said: I don't want to leave yet. That is music to my ears.

Secondly, we are struggling with her port access, shots and blood tests. I don't blame her, who wants to be hurt like that? In the beginning, everyone told me that this would get easier. I was doubtful but believed them mostly because I was so naive. Well, I can say for Meredith it has gotten harder, not easier. There are so many things that did get easier as time went on, like the anesthesia for the radiation and I am so thankful for that, but port accesses have not gotten easier.

Last Monday was a long day of chemo. Those days are a litte easier because the access is further away than the deaccess (taking the butterfly out). On a short day, the whole thing is so traumatic that there is no calm time. I have seen signs on the walls about a program called Beads of Courage, but I didn't know what it was. It was good because it gave us a new project to work on, other than all our crafts we brought. The idea behind Beads of Courage is to give a bead for each thing that the kiddo has to do. So, for instance, any "pokes" (port access, blood tests, shots) earn a black bead (we have had almost too many to count). A hospital stay is yellow (we have had 3), a blood transfusion is red (2 for us) and radiation is a glow-in-the-dark bead (28 for us). I like that they have a sense of humor. X-rays, CT scans, Spinal Taps all have their own colors. While we certainly have a lot of colors, thankfully there are colors we have not seen and hope to not see. As you can see from the photo, we have A LOT of beads. It is hard for so many reasons, but mainly for me is the fact that we are not even halfway and already we are on our second strand of beads. I hope this reminds her of just how incredibly brave she is. I am constantly impressed with her endurance and her bravery. I imagine this wil be something she will have forever and remind her of what she has been through.

We have two weeks off from chemo so her next big day is October 24. Her reactions have been getting worse but maybe it will be a little easier because we have had a couple of breaks. Fingers crossed. Thank you for all the cards, emails, check in calls and love. It means so much to us.

Heartbreaking

This photo breaks my heart. My heart breaks so often. Meredith told me her dog is not feeling well. As you might imagine, Meredith has not been feeling well. I haven't written in a little while, so I will back up and catch up and then tell you more about her dog.

On Saturday, September 3rd, we left New York and traveled home. Meredith wore a mask for some of the trip. Thankfully, it was uneventful and we both were able to sleep. We were warmly welcomed by Steve, Zach, my mom and her friend. It was joyous and a little overwhelming for both of us. We had a nice trip home and when we opened the door, the house was busting with balloons. Steve and Zach had blown up a million balloons and it was a wonderful way to come home. Stan was also excited to see us. We spent the whole weekend in the house, doing laundry, catching up. All weekend long I would hear Meredith say: I forgot about this, or I really missed this. It is so great to be home.

On Tuesday September 5 we went to her first day kindergarten. The other kids had started about two weeks earlier. She had a short day of chemo on Wednesday, September 6. She tolerated that well, but as usual hated the butterfly (port access). She went to school for half days on Thursday and Friday. She seems to like school, but it is definitely hard for her. We walk Zach to class first and walking down a hallway full of first, second and third graders is hard for anyone, but for us, it is heartbreaking.

On Monday, September 12, she had another big day of chemo. It is definitely taking it's toll on her and we didn't even make it to the playroom this visit. We did a lot of television/movie watching. We also went to the eye doctor so they can check out her drooping eyelids. The doctors think it is from vincristine toxicity. Vincristine is the main chemo drug they give her and it is not unusual to have toxicity. The eyelid drooping seems to be an unusual side effect. The left eye, which got more radiation, is dropping a bit worse than the right eye.

On Tuesday, after her big chemo, she napped in the morning, which is pretty unusual for her, we went to the hospital for her gcsf shot. This shot is also called nuelasta or a g-shot in NY. This is a shot that she gets about 24 hours the big chemo day or any time she is needing more white blood cells. This is my understanding on how it all works.

Each kind of cancer has its own recipe. These recipes include options for surgery, radiation, chemotherapy. The type of chemo varies, the duration of the chemo varies. The radiation amount varies as well depending on the particular recipe. So, for instance, Meredith has a recipe of the following items: 43 weeks of chemo (of which we are on week 14), 28 days of radiation (which Meredith has just completed). She also had surgery to remove her tumor. A kiddo with leukemia might have 2 months of intense chemo and spinal taps. Other kids might not have any radiation, especially if their affected area has been amputated. Some kids have radiation 2 times a day for 14 days. Those poor kids can't eat until after 1 or 2 in the afternoon, maybe later. Some kids have bone marrow transplants every day. Some kids have to get shots everyday for a month, usually from their parents.

After her gcsf shot, we picked up Zack, went to chiropractor, karate and home. At all those places she did great. By the time we got home, she did not look good though. She fell right asleep on the couch and had a 102 fever which is a big deal in kids with cancer. We spent the night in the hospital. She was hydrated all night and most of the day. She slept most of the morning and finally started eating and drinking around lunchtime. We left and she has been doing really well since then. She even went to school on Friday, i picked her up right after lunch. Lunch and recess are a little overwhelming for her. There are at least 100 kids around. She is not used to that many kids. A lot of those kids are looking at her. She has at least two adorable friends.

Zach has been taking karate since he was 4.5. He is a blue belt right now and slowly but surely he will earn his black belt. He likes to dress like a ninja, which is any outfit that he can wear a black shirt and black pants. Black underwear makes it even better. Meredith likes to dress like a ninja too. On Friday, her only day of school that week, she dressed like a ninja.

We had a long week last week and this was even longer. My fingers are crossed that this week will be easier. This is the first time in 3 months that she will not have to have chemo. The way our recipe works, she has no chemo for the next two weeks. She has a couple of other breaks like this. Our recipe has potential vincristine toxicity break built in. Which is good, because. She is starting to experience this.
Which brings us to today. She has been doing a lot of medical play, as it is called. Both Steve and i have had our imaginary "ports" accessed. Most of her dolls have had to get shots, blood pressure take and medicine.. This time, her dog was nauseous and was preparing to throw up. Last night that dog slept on her floor all tucked in, with a baby blanket, just like Meredith. I didn't know a heart could be broken so many times. My poor baby.

I can't say it often enough, but thank you all so much. All the support we are receiving is so very appreciated. The cards, the prayers, calls, texts, meals, small smiles, gentle complements to Meredith, love, hugs, calls. I am constantly overwhelmed by the love around us, I can never express it properly. But thank you. I hope to never have to make it up to you, but I will, or to someone else. Over and over, I am graced with acts of kindness great and small.

This has been a couple of days for us. Yesterday was her long day of chemo. That is in addition to radiation. Also, every Monday she has her port "accessed".

In short, there is a port surgically implanted in her. This is a small disc with a bump on it. During this radiation period there is a tube (or tubey as we call it here) attached to the port all week. A needle (it looks like a super long thumb tack) is directly in the port and the needle is connected to the the tube. Meredith calls the needle a butterfly because in Denver it looks like a butterfly. Here it is flat so sometimes she calls it a ladybug. Which kind of stinks because that is one of my nicknames for her. This is all covered with gauze wrap so you can't actually see the needle, just the tube sticking out. The tube goes down to her waist. When she is accessed, she can't get it wet, so no beach, pool, shower. We have devised a system so she can take a quick bath at night. She gets quite dirty at the hospital, so some kind of washing is necessary. She has to be accessed all week because she is sedated for radiation each day. They put propyfol in her tube, she goes to sleep, they put a mask on her, she has radiation, wakes up and eats. From there we usually go to a doctor appointment or we go home. On Mondays she has to have chemo. Accessing the port is usually pretty traumatic. So, put that all together and Mondays are super hard.

Yesterday, after the port access, she had radiation, then we come to the Pediatric Day Hospital and get a little room so she can have her chemo. We spend the whole day here and yesterday Jennie, my bestest friend came to keep us company. It was wonderful to have her here. Both Meredith and I loved her company. We got home and had a nice dinner, compliments of Bette and Meredith went to sleep. That is where the hard part started. Most of the chemo day is actually hydration, and therefore she had to go to the bathroom all night. In fact, in NY, they send us home with a "backpack" full of hydration, so she is hooked up overnight. They are trying to move the chemo through her body, which is great, but it makes using the bathroom difficult. She woke up several times, with an extremely full, painful bladder. Also, because the radiation, she has sores in her mouth and nose. Her nose is bleeding a lot and it is painful, so that keeps her up quite a bit. Needless to say neither of us slept very much last night. This morning, we woke up, came back to the hospital, had radiation and now we are back in the Day Hospital for more hydration. It is pretty mellow, just a lot of trips to the bathroom.

Because of the sores, trying to find food for her to eat has been quite a challenge. It has to fall in three three categories: it can't hurt her tongue, it can't make her nauseous and she must have an appetite.

Tomorrow should be more of a normal day - radiation and a doctor appointment, and then we get to come home. Our next long chemo day should be in Colorado, fingers crossed.

Luckily for us, we had a very nice weekend, which made yesterday a little more tolerable. My dad and Robin came in for a visit and we stayed in NYC with them. We walked for miles and had a great time finding food for all our food restrictions. It truly was a nice vacation from the day to day monotony of this experience.

We can see the end of this part. If all goes according to schedule, we should be done by Wednesday. We cannot wait to go home and see Zack, Steve and Stanley. I can't think about it too much.

Week 3 Complete!

Today is Sunday, August 14. I actually had to check the date on my computer because I find that I am in a total time warp here. The time warp becomes really bad when we walk into the hospital. Even though, out of habit, I must check my watch throughout the day, it must not register. I am always amazed when we leave and I figure out the time. Sometimes I am surprised at how late it is, sometimes how early, but either way, I have no feel for the time.

We have crossed the halfway point which is very exciting. I have always felt that the second half of anything goes faster than the first. As of Friday, she completed 15 sessions of radiation. She has 28 total. If she stays on schedule then we should be done by September 30 or August 1. Some things that might through off the schedule is pain or sickness. She has been in some pain over the weekend - her nose has been bleeding, her eyes hurt and her throat hurts. Finally she agreed to take some tylenol. We have stronger stuff if she needs it, but thankfully, she doesn't seem to need it yet.

It is a rainy New York day today. We have seen more of these days since we got here than we see all year in Colorado. As a former New Yorker, I love days like today. It started around midnight and includes thunder and lightening. In order to get to the hospital every day, I wake up at 5 and get her up at 6. On the weekends we still tend to get up early because our bodies are used to it. Today we slept until 7:30 because of the rain. It was amazing to sleep that late.

On Thursday she complained of blurry vision so on Friday we went to see an opthamologist. I really like that they take care of her complaints right away. The doctor checked her out and thinks it is from the chemo and not any damage from the radiation. It was traumatic because they had to put all sorts of drops in her eyes, but it was worth it.

Tomorrow is a short chemo day. They will check her blood and make sure she doesn't need a transfusion and she is not neutropenic. They checked on Friday and everything looked great. My dad and Robin are coming for a visit next weekend and we are beyond excited about that. We spent some time with Aunt Cathy and Uncle Rich this week, which was wonderful. We are hoping to see Andy, Laurie, Ben and Jordana today. We got to speak with Zach yesterday and he is very excited to start school.

Much love to everyone and your support is unbelievable. Thank you, we could not do it with out knowing you are there.

Week 2 complete!

Steve and Zack just left to head back to Colorado so Zack can get settled in before school starts. Steve took the kids to the Bronx Zoo to see the LEGO exhibit. An awesome time was had by all.

We are done with another week of radiation and she has 10 down and 18 left to go. She is doing great and this week should be easier than last week. Last week she had a long day of chemo and a second long day of IV hydration. On Tuesday night she got a low grade fever but even low grade is very serious for kids with cancer. On Wednesday they gave her some IV antibiotics and ran all sorts of blood/urine cultures. By Thursday she was back to her spunky self and Friday we picked up Steve at the airport and took him to the hospital to see everything and meet (almost) everyone.

More later in the week. Lots of love and thank yous.

Week 1 complete

So one week of radiation is complete! It is Sunday night and this weekend might as well have been a vacation to Hawaii. We did not have to go to the hospital all weekend which really was amazing. Meredith did need a shot on Saturday, so we thankfully had Dr. Uncle Andy come over and administer it. I know I could do it if I had to, but thankfully, I didn't have to.

She needed a shot because her Neutrophils are too low and she is more likely to get an infection. If she gets a fever we have to bring her to the hospital for IV antibiotics. Obviously, we are hoping that this won't happen. In the mean time she is doing all her regular kid stuff. Yesterday we laid low, but today we had an awesome day at the beach with all the New York Yachts and some Hochmans. It was a perfect day and I am so thankful for days like these. Seeing my kids playing in the ocean was amazing. I am sorry Steve was not here to enjoy it.

Tomorrow is a big day for us. We start at 7:30 with radiation then 8 hours of chemo. We received an incredible basket from Aunt Laurie and Uncle Andy's friends and she has picked a few goodies to pass the time tomorrow.

Thank you for all the support. We absolutely could not do it without you.

Day 1 Radiation Done

So, thanks for reading meredith's blog. I will catch you up on what has been happening because I have not been good about keeping this updated.

We are currently in New York and staying with Steve's parents. Meredith will have chemotherapy for 43 weeks and 28 days of radiation. This radiation is spread through 6 weeks because they only do it on week days. We are in NY to go to a radiation oncologist that specializes in head tumors in kids. We really had a hard time deciding if we should come here but once we made the decision we knew we made the right decision. She will continue to get her chemo while we are here.

Today is the first official day of radiation. Only 27 more sessions to go. We might try to do it without anesthesia. Last week they created a mask for her so the radiation is very directed. I just asked her about it but she is freaked out about the mask, so she like likely sleep through the radiation. Usually, it will only be 5 minutes or so. If she can do it awake, she can eat, it will take a lot less time because there won't be any recovery time and she will likely be less cranky. The propophyl tends to make her a little cranky. I would be too if I were her.

They test her blood two times a week during radiation. Today her hemoglobin was too low so she is getting her first blood transfusion. She is snuggled into a bed and watching PBS.

We are all adjusting well to NY. The first couple of days were hard for zack and the next couple were hard for Meredith but overall, I think they are doing really well. There are a ton of silver linings and we are focussing on those. Zack and I remind ourselves by saying we are making lemonade (out of lemons). Our best lemonade has been hanging out with our awesome cousins Ben and Jordana and awesome grandparents, aunts, uncles and cousin Adam. We are so very lucky to be here with them.

We miss steve a ton. We are going to Skype tonight, so that should be a lot of fun.

Thank you for all the support. There a no words to describe how much easier it is to know we have people praying, wishing, thinking about her. more soon.

6.21.11

No big news today. Meri slept fine last night and had a pretty normal day today. A little more tired, maybe, but nothing significant.

She had to go back to Childrens to get a shot - I am not sure what the medicine is but it is something to keep her immune system high, I believe. (I'll update when I get more info). She will get one of those shots after every 8-hour chemo session.

FAQ

Just some quick info about this blog:

Who is writing this blog?

Mostly Lori, Allison's sister. But Allison or others may be contributing in the future too.

Why are you writing this blog?

So many caring people want to be informed about how Meri is doing. It's easier to spread a blog around than tell to share the info in any other way.

What can we do to help?

Thank you for wanting to help - You are awesome and wonderful! We are working on putting together a website for help. We actually already have it set up but we need to populate it with opportunities. If there is something you already know you want to do, and you need info to finish the job (address, suggestions as to times to drop things off, etc.) just email me: loriwelty AT gmail DOT com.

Feel free to use that email address for any other questions about Meri, etc. I will do my best to get you answers to your questions!

6.20.11

Day One of Chemo is done! Despite last Thursday's traumatic port experience, this time went smoother. The day was generally non-eventful and even pleasant despite the fact that they were confined to the hospital with Meri hooked up to an IV for EIGHT hours. She got to roam around much of the day, playing in the playroom, zooming around on hot-wheels and coloring in a coloring book.

They gave her anti-nausea medicines during the day and sent them home with them as well. By the end of the day, Meri was exhausted and starting to complain about her tummy hurting. :( When I last spoke to Allison, Meri was asleep, and we are keeping fingers crossed that she has a restful night.

The doctors told Alli that the peak sickness for this particular chemo (the 8 hour sessions) is 10-14 days after infusion. I am hoping that means just a lot of sleepiness for Meri and not a lot of nausea.

6.17.11

Last night was a tough one. Meri had been feeling icky off and on during the day - headachey, mostly. Early evening, she was in a lot of pain, complaining of sore legs and a stomache ache, and she was running a fever. Off to the Children's hospital ER for the night... They got to put her new "port" into use, drawing blood for bloodwork. Meri did not like it AT ALL, but hopefully it was more scary than painful. The bloodwork all came back clear (phew!) but it leaves her pain a mystery still. She's been through a lot this week with all of the testing, so the working theory is that it took a lot out of her and her body is reacting to that.

She felt better today, though still not 100%. Hopefully this weekend she'll be feeling better and better so she can enjoy some beautiful weather and Father's day. :)

Monday chemo starts - and based on how much she disliked the port being used, we are concerned about how that will go. Hopefully (there's a lot of "hopefully" right now) it will be less scary this time, and she'll get used to it quickly so at least that part of the process isn't traumatic.

6.16.11

Today we got the details of Meri's chemotherapy treatment plan. She will begin on Monday. She will have the V-A-C chemo treatment which is a combination of 3 different chemo drugs. She will have chemo every Monday (mostly - there are little changes here and there). Every 3rd week, chemo will be LONG - 8 hours! - because the chemo drug needs to be introduced and followed with saline solution. The other weeks, it will be 1 hour of chemo. So this week is an 8 hour session, then the next week is 1 hour, 1 hour, then 8 hours, etc.

The doctor said she will start feeling nauseous about 4 hours or so after treatment and may feel sick for a day or 2. They are giving her 2 anti-nausea medications so hopefully that will help. The doctor said some kids don't feel sick, so we'll have to wait and see, and keep fingers crossed.

Every 15 weeks Meri will have scans to see how things are going, and make sure everything is progressing as planned.

6.15.11

Tomorrow it's a trip to CHD to learn more about the chemotherapy regimen Meri will be starting on Monday. Right now there are a lot of unknowns - how the chemo sessions will go, how she will feel afterwards, etc. Tomorrow we'll have some answers but I am sure some will be a "wait and see" to see how it goes.

On Monday, June 7, Meri was diagnosed with Rhabdomyosarcoma. After a month or so of a stuffy nose, she woke up with a black eye and it was clear something was wrong. A catscan and surgery followed. She had a tumor growing in her sinuses and nasal cavity.

Since that day, she has undergone more testing (MRI, petscan, catscan, bonescan, bone marrow biopsy, spinal tap). We have learned that the cancer has not spread. It is considered Stage II (not Stage I only because of it's location).

She is an amazing kid - she bounces back after each procedure amazingly well. She is incredibly strong, dynamic, smart and resilient, and we know that she is going to get through this stronger than ever.

This blog is intended to keep family and friends up to date on the latest information and also keep people informed about how they might be able to help and support their family.