Great News

Good News

This post is all about good news. We just got back from a great trip in New York. We went to see Meredith’s radiation oncologist. We got a great report and don’t have to make a follow up appointment. She asked us to stop by and see them next time we are in NY. While we were there, we went to the top of the Empire State Building. It was wonderful and we had a great time roaming around NYC. Zach got to go to the LEGO store and Meredith to the American Girl store. What a treat! We got to see lots of NY family and generally were spoiled rotten by Steve’s parents. It was a wonderful trip.

We are getting very close to the end of the odyssey, fingers crossed. Meredith has a long day of chemo on February 28. She has two weeks off and then her last chemo (again, fingers crossed) is March 20. She will have scans soon after that.

She has not been to school in a while. For a few weeks her counts were so low that I was hesitant to send her to school. Her counts from Tuesday were great. Overall, she hasn’t been feeling that well, but I am not sure why. She could be fighting something or just having a reaction to the chemo. So, if she is feeling up to it, she will try school Friday.

Also, save the date for our Good-bye Stupid Cancer party. It looks like it will be July 21 but will update as it gets closer.

That is our general news. I will write again after scans. Fingers are crossed, big time. Thank you for all the support. I can’t believe this is almost over. We couldn’t have done it alone.

Great Scans

I just wanted to write a quick note. Meredith has scans scheduled every 12 weeks. Yesterday, she had her second set of scans and everything looks great. We are thrilled with this news and wanted to share it. Yay!

Happy New Year!

Wow, where has the time gone? Let's see, Meredith is now in week 28 and I can't believe I am going to say this, but I feel like we are getting close to the end of chemo. She continues to do amazingly well. Her blood counts are looking great and her side effects seem to be doing ok. we had a long day yesterday. It is exhausting but she is doing great. The doctors and nurses are so proud of how far she has come. While she is still apprehensive about the port access (butterfly) and her shots, she is not kicking, hitting or calling them names. This is a huge accomplishment for her.

Meredith is on a combination of three different chemo drugs. One of the drugs is vincristine and it can become very toxic very fast so they keep a very close eye on the side effects. Meredith's tumor was in the sinus cavity on the left side. It came out her nose and went down her throat. The radiation was that whole area but especially her eye. Her left eye is very swollen. The doctors thought it was a side effect of the vincristine but after speaking with several doctors they think it is from the radiation and will eventually look more normal. For the last several months she has had a reduced vincristine dose. Yesterday they gave her the full dose. It is a strange thing to be happy about, but I find myself to be happy about this. I feel like it is going to get that cancer. She just had two weeks off and she has two weeks off again. I think she did better with the long day because she has had these recent weeks off.

We had a great Hanukkah and got to see a lot of family. They both had a lot of fun playing with cousins and the Colorado/Florida grandparents. We are planning a trip to NY for her radiation check up and we can't wait to see our NY family.

We have started the process for Meredith's wish from the Make A Wish Foundation. What an amazing organization. We are talking about our trip to Disney World. It is especially nice to have this to think about while we spend the day at the hospital.

Otherwise we are excited to get back to school. It is hard for everyone to be off the regular schedule. Thank you for all the support. This is an especially hard time of year and we couldn't do it without our team. Lots of love and hope for the New Year.

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.