A break and a change in meds

 So the last few months have been pretty uneventful, but Riley's GI symptoms continue to persist. They have lessened since lowering her dose, but are still present. I think the hardest part is that symptoms can come on suddenly and ferociously with no time to plan or prepare. This has caused deep anxiety for Riley and at this point she pretty much refuses to get in the car and go anywhere. She met with her social worker a week or ago and we are moving towards a therapy plan. This is just as important as her daily med and so needed when her life is turned upside down and it feels like no one understands or really gets it. Jaron and I can say we understand, but we just don't. She does not feel like herself and on top of a pandemic and all its restrictions, every day feels hard and lonely. 

We had her neuro-oncology appointment today and due to her continued GI symptoms, they are giving her another break from medication and will be switching her to a new oral chemo med - Solumetinib. This drug was FDA approved in April of this year, but her doctors have a lot of experience with it as there was a large trial done at Stanford. This drug is similar to Trametinib as it is also an MEK inhibitor and still targets Riley's specific tumor mutation (BRAF fusion). We should not lose any time in our chemo regimen by switching meds, which was a worry of mine. Her oncologists said they have actually seen greater shrinkage of tumor with this med so we cross our fingers and carry on. 

6 month scan

 Jaron took Riley to the hospital yesterday for her appointments. The drive to the MRI and the MRI itself were described as "traumatic". They had to make an emergency stop on the way for the bathroom and arrived late. Her MRI was in the outpatient clinic and the staff was not as caring as in the past. Riley said it took the nurse 5 tries to get her IV. She was experiencing a lot of stomach discomfort and they had to stop the MRI two minutes in. Jaron thought it might have been more of a panic response due to not feeling good. More tears, but Jaron was able to talk her through it and she finished the scan. 

The later morning and afternoon brought some relief and her oncology appointment went well. They said her tumor is stable- there may have even been some very small shrinkage (0.2mm). Her symptoms have caused them to have her stop her medication for a week and then re-start at a lower dose. She is happy for the short break. Her echo and EKG went fine. 

I think it was an especially hard day for both of them. The reality of these appointments bring heightened emotions. Most days/weeks we can get through without thinking much about the reality. 

We have a neuro-surgery appointment next Wednesday so we should hear the final results of tumor board before or at that appointment. This is just a check in and there is no thought of surgery at this point. 

We keep on going; moving forward with hope.

 

6 months in...

 Riley is just about 6 months in to her chemo. It seems crazy that we are only a quarter of the way through. 18 months to go and it seems so far off and so hard. Her dosage has not changed, but she still has good days and bad days. The unpredictability of symptoms is the hardest part. Chemotherapy = poop. After Riley's beach camping experience she is very scared to not be home or close to a bathroom. Ugh. Her stomach pain and nausea comes and goes though I have felt like she has complained more about the pain and diarrhea these last two weeks. We will start a probiotic and try an Imodium regimen and see if this helps. Her diet is very important too- we are trying for very little sugar as sweeteners tend to make it worse. She has been feeling so tired too. She does not have much energy. With her energy focused on her body and helping it to feel the best she can, she just does not have much energy leftover to devote to school or activities. School is a big stress. Of course we continually tell her to only do what she can and to just try her best, but it does not make it any easier when you feel like you just can't keep up or handle it all. She is 13 and navigating treatment, distance learning, being away from friends, coronavirus, wildfire warnings and evacuations...it is too much. If you are reading this and have kids or teach kids, 

PLEASE BE SO GENTLE WITH OUR CHILDREN. THEY ARE FRAGILE.

Be kind, calm, loving, easygoing, forgiving, encouraging, and fun. I know Riley has a struggle that most kids do not have, but kids in general are having a very hard time. They are doing their best, but it is so hard. They may not speak it, but the stress and sadness is there. Our older daughter, who is easy going and my emotionally stable child :), had a zoom basketball practice a few weeks ago. She was out of practice and the workout was hard. She felt defeated after. When she came in, she broke down in tears and was on and off crying for 2 hours. I don't think her reaction was solely about having a hard basketball practice, but I feel it was the last straw on months of sadness in not seeing her friends, the stress of school, exhaustion, and it broke her. She bounced back of course, but it was an eye-opening moment for me. 

We have Riley's 6 month appointment next Wednesday the 14th. She will have her MRI, echo, labs, and her in person oncology appointment. Hopefully we will get a little more insight into if the Trametinib is working. Her previous labs have all been great with all her values in the normal range except her creatine kinase. It becomes elevated with treatment. The standard range is <170 and her value has been about 335 the last few months. No worries there, just a part of the treatment.  I will post another update next week after these appointments. 

August update

 There have been so many days where I felt I needed to write an update, but then I was just too overwhelmed and the words just wouldn’t come. 

We had a few sweet surprises from friends the week after my last post and it was very emotional. One of Riley’s teachers sent her a surprise gift- an adorable chocolate lab stuffy which made her smile. Of course I burst into tears because I am hyper-emotional. 

A lovely friend dropped off delicious Indian food and a stuffy for Ry. I cried with her as she understands our bumpy road and knows the greater pain of suffering and losing a beautiful child to cancer. 

Another wonderful family sent a beautiful basket filled with goodies, but also arranged for a few girls in Riley’s grade to make sweet gifts filled with her favorite goodies and encouragement. She was so happy and started crying after opening them all. It always feel good to be thought of and cared for. 

We had her 3 month appointment and her scan is stable. No one expected much change at this appointment. Her 6 month scan in October will be more telling about the efficacy of chemo. 

Her side effects are many, but they are manageable and don’t seem too bad when thinking about traditional chemo. BUT here’s the reality- it is so hard. She is doing well, but honestly she is just angry and upset a lot of the time. She’s just so frustrated and it hurts so much to watch her go through it all. I’m tired and we are only 4 months in. Another 20 months seems horrible. This is hard. Of course it is all worth it and we are so grateful. Please don’t misunderstand how grateful we are for her treatment plan, doctors, insurance, and the privilege to live so close to Stanford and have great comprehensive care. I just want it to go away and for her to be healthy. 

The tears flow so easily now but I think that’s a good thing. I never want to hide how we are doing or how our journey is going. We are okay. We are so loved and taken care of. 

Stay Strong

I found this on the fridge this morning and it made me smile. Riley often writes little notes of encouragement on the mirror in her bathroom, her bedroom, or in common areas around the house. There is so much truth in this one. God loves us so deeply and gives us strength when we feel weak and tired. We have felt weary. Riley developed mouth sores and they have been uncomfortable. She was prescribed “magic mouthwash” which our insurance denied. It costs about $75. Seriously? They pay over $10,000 a month for her chemo but can’t pay for a simple mouthwash for a side effect? Thankfully, our health care team prescribed one of the ingredients and I was able to get the others over the counter and with some diluting and mixing I whipped up a batch for about $20. I think it’s been helping. She seems less uncomfortable these last two or three days. I also discovered that her hair is changing color! It’s totally growing in super blonde. This is yet another side effect but one she doesn’t mind as much! Her doctors said she is getting every side effect! Most only get a few things but they just keep on coming for us. Riley is in good spirits overall but feels lonely. She also explained that because she is taking oral chemo and not in the hospital that people don’t really understand that it is still hard. Even though she looks well she may really not be feeling well at all. I have been so thankful she has been open and communicative about how she is feeling. But I am so sad for her having to go through this. She is so brave and I am so proud of her. So, we stay strong in each other and in our loving God praying for no more growth and more good days.

Just keep swimming

Just when you think you are settling in, things change! Chemo is NEVER predictable. Riley has had more stomach issues these last few weeks. Rash and acne seem to be stable but the stomach aches and diarrhea are off and on which makes it hard to plan ahead. She has always had a sensitive tummy so I knew that she would most likely suffer from some GI issues.
Ry will have her monthly labs this week and an oncology appointment on Wednesday. I do not anticipate any changes or new information. She has her big round of testing late July (MRI, echo, labs, oncology follow up) so we are just plugging along. The scans, heart echo, and an eye appointment (this chemo drug can cause some eye issues so they maintain regular checkups)  will be done every 3 months throughout treatment.
Jaron and Avery will take a camping trip up to Tahoe this week with some friends which will be a lovely time to rest and relax while Ry and I snuggle up here at home. This definitely does not feel like a regular summer, but we will continue to embrace the quality time together as a family which we have been so grateful for. ❤️

Settling In

Riley has been doing really well these last few weeks. She has settled into a great nightly routine- she is super responsible and we are so proud of her. Her side effects have lessened some with only occasional GI symptoms and a decrease in her scalp rash. Her main side effect continue to be acne, which of course does not make her happy at all! Her energy level is normal and she finished the school year strong. She was able to have an end of the year social distanced park date with 4 friends which really helped boost her spirits.
We continue to pray for good health and minimal side effects as we move into summer. We had to cancel our Italy/Tanzania trip for the summer but are hoping for some good camping experiences with the family and our new pup, Tucker!