May 19, 2012
So sorry for the delay in updating! A lot has happened since the last time I posted and Robert and Hollie have been so busy it has been difficult to update everyone.
Marlie had her surgery on Tuesday, May 8th. Hollie reported the following after the surgery:
Sorry if you were looking for an update, I thought it posted last night, but it didn’t. Marlie got out of surgery around 6pm, and did wonderfully! Dr. Sandler was able to remove allll of the giant tumor and a lot of the smaller ones, but the best part is, that when the pathology report came back, it showed that all of the tumors had matured, which sounds bad, but is the best possible situation. A mature tumor is one where all of the cells grow and grow and then, for whatever reason, stop dividing, which is why the chemo didn’t yeild much shrinkage. Dr. Sandler, who is a world-renouned Wilms’ surgeon said that he has never seen anything like it, so they are probably going to publish Marlie’s case.
life is good! Marlie is comfortably sleeping and still has her epidural line in place, so she should remain comfortable. Please feel free to ask any questions and I’ll try to answer as best as I can. Thank you everyone for your prayers and very positive energy, I know that it made the differance for our little girl.
Marlie was then discharged on Friday, May 11th and Hollie reported the following that Friday:
First full day home today. We got out of the hospital a full two days before we were told to expect to. The doctors are shocked at how quickly Marlie has bounced back. We never cease to be amazed by our tiny girl. She has had a bit of soreness, but baby percocet has helped with that. We are so glad to be back home, with all of us under the same roof for the first time in about two weeks. Marlie was so happy to see Spencer again, she gave him big smiles and lots of laughs. We are really looking forward to getting back into our routine.
We have an appointment with our oncologist on Tuesday. It is at that appointment that we find out what the near future looks like. We think it will be six more weeks of chemo, just to be sure that they got all of the bad cells, but our hope is that we might be done completely because her tumor matured completely. Fingers crossed!
We want to thank everyone who supported us these past few weeks, especially the grandparents and great-grandparents, for lifting Marlie’s spirits. And another thank you to my (Hollie’s) mom and dad, for caring for my best guy. Our lives would be much harder with out you. Also, thank you to our fantastic neighbor Dean, who mowed our wheat field of a lawn! It was really nice not to have to come home to a big chore
I will update when I have new information.
Finally, they did meet with the oncologist on Tuesday, May 15th and received surprising news. Whereas they originally had said the tumors were mature, they now believe they were/are immature tumors. This means that they are pre-cancerous. Without any treatment the likelihood of the tumors turning cancerous was 50% but with the chemotherapy they likelihood will be reduced to 20-30%. Marlie was prescribed 13 more weeks of chemo. Once chemotherapy is completed, Marlie will have an MRI every three months to ensure that the remaining tumors do not turn cancerous. If they do they will be surgically removed. If they do not, this 3-month check-up will happen until she is eight years old at which point the threat of them turning cancerous has passed. There is another doctor appointment this upcoming week before the chemo begins again.
Thank you all as always for the love and support.
May 6, 2012
Tomorrow is a big day for the Case family as they will be meeting with the surgeon to consult on whether Marlie will be going ahead with her surgery on Tuesday. The family received disappointing news last week that the tumors had not shrunk enough from the chemotherapy. The doctors will evaluate the tumors either after removal or biopsy Tuesday. What they find will determine how much chemo Marlie needs after and whether she needs radiation or not. Let’s all hope full removal is possible this week and that only chemo will be necessary after. I’ll update again when we find out more.
May 1, 2012
Jennifer again with a short update. Marlie is still in the hospital, but her fever finally broke late last night. They determined the cause of the fever was influenza type B (which supposedly is more rare than type A). Today Marlie was scheduled to have a kidney functioning test and her final pre-surgery chemo. To have the kidney test she was required to fast, which made her incredibly unhappy to the point that they had to do the test earlier than originally planned. As of my writing this she is undergoing that test right now and afterwards the plan is for chemo. Tomorrow she is scheduled to have an MRI. As of now she is still inpatient, if she is discharged today it won’t be until late in the evening so they may just keep her overnight as she will have to be back first thing in the morning anyway for that MRI. Thursday they should get the results back from these tests. What we are all hoping for is that they will conclude the tumors have shrunk sufficiently for surgery. If they have, the surgery has already been scheduled for Tuesday, May 8th. Thanks from the family to all the well-wishes and keep those good thoughts and prayers coming!
April 29, 2012
This is Jennifer writing with a mini-update, but a more informative one will follow later this week. Marlie had her 5th session of chemo this week – only one to go before her surgery consultation! Unfortunately at the end of the week she came down with a fever and had to be taken to the hospital, where she was given a superdose of antibiotics. This did not succeed in breaking the fever and poor little Marlie has been admitted into the hospital. Robert said she is feeling better from the medicine but she will not be discharged today. Sadly, this is all part of the process. Robert and Hollie were told from the beginning that she would certainly have to be taken to the ER at some point during all of this, as the chemo weakens her immune system. So please keep sending the good thoughts/prayers this way. Hopefully she will be discharged tomorrow and have her last pre-surgery chemo.
April 20, 2012
Marlie had a pretty good week this last week. We spent a lot of time at home painting and playing with play doh. On Tuesday we went to chemo. We found out that her counts had come up a bit from last week, which is good because this session she got all three drugs, which makes it more likely that her counts will drop over the next 7-10 days. It was an extremely tiring day, but we got through it as gracefully as we could. Marlie slept the entire car ride home and went to bed early.
On Wednesday she seemed to feel OK, but was still really tired. However, after an early and long nap she perked right up and wanted to go to Grandma Kathy and Grandpa Jan’s house.
Thursday was a great day, Marlie’s best friend Emma came over to play all day. They had a really wonderful time, running and screaming and laughing. We also got the schedule for the next step on our journey. The first week of May is going to be a hectic one. The 30th is going to be our last session of chemo, then on the 1st Marlie will be going back to Fairfax Hospital to go under anesthesia, in order to have a Renal Function Test, to get a baseline reading of her current kidney function. While she is under the doctors have also ordered an echo-cardiogram. We do not have to spend the night, but we will have to be back at the hospital on the 2nd to go back under anesthesia for an MRI. Then, on the 3rd we are going to drive into DC to go to Children’s National Medical Center to meet our surgeon and review the results of our tests, and **hopefully** we schedule surgery because there has been adequate shrinkage. If not, they will probably schedule to do a biopsy to find out more (favorable vs unfavorable, stage it, etc.) and determine if a more aggressive chemo treatment is needed or just a longer period before the shrinkage is adequate for surgery.
Today (Friday) was a really good day. Marlie seemed completely over the effects of the chemo and was ready to go! Early this morning we took Great-Grandma Pat to volunteer with Grandma Kathy at the FOHA thrift store. We need to go early to avoid the crowds. At this point her counts should still be pretty good, but we still want to avoid sick people. Marlie loves to go to the shop, all of the volunteers love her and give her costume jewelry (she has quite the collection . Later in the day we went over to the Cub Run playground when we noticed that there weren’t too many kids. While there Marlie made a new friend, and got an invite to a new playgroup. I really hope we can go to the next get-together (fingers crossed). All in all, a really good day. Continuing to feel really positive. We will update again after next weeks chemo, or if anything important happens. Thanks for reading!
April 12, 2012
Marlie had a fantastic Easter! She was excited to get an Easter basket, candy, and hunt for eggs! We couldn’t do the huge egg hunt with tons of kids this year given the situation. She had the third round of chemo on Tuesday, like last week it was only 1 of the chemo drugs and again she has tolerated it well. We have noticed her hair is noticeably thinner and falling out. Her counts however are good still. Her blood pressure really dropped to a normal range and they said the tumor has shrunk which is great since the chemo is working. Her white cell count dropped a little to under 1000 but not a concern. We do have to be more careful again with playing outside and going to any stores because her white cells are under 1000 but still so far everything is going as scheduled. We have MRI and consult with the surgeon scheduled for May 1 and 2 respectively, which is immediately after the week 6 chemo. We will then know if we are ready for surgery or need more chemo then will be able to do surgery. She is doing great, happy and full of energy! Next week she gets all 3 chemo drugs and that will lower her count more and will probably have her really tired, weak, and maybe upset tummy also.
Thank you everyone for everything you have done and do for us during this time. We are so thankful to have such great people in our lives!
We will update again soon!!!
April 2, 2012
Over the weekend Marlie had a great time! She felt great and had visitors. On Friday morning Aunt Jennie and Uncle Charlie came to cheer Marlie up. Charlie had a cold and was unable to see Marlie on Friday or Saturday. He was able to see her Sunday though and she was happy to see him! Marlie had a great time with Aunt Jennie and all her other family this weekend!
Today was a very good, very long day. This morning we went to chemo and we got to see Marlie’s friend Mikayla, who is 4 and has the same type of rare tumor. She is a couple weeks ahead of us in treatment and doing great. After we checked in Marlie also got to do art therapy with the Child Life Specialists. The Child Life specialists are wonderful, they really help pass the time and keep the kids engaged in something fun and creative. Today Marlie made a bunch of paintings for daddy to take to work. Her blood pressure is a little high still, though it is getting lower! All her other counts are excellent, especially the white blood cell count! They are saying she can play more outside now and go to stores early when they open since that is when crowds are very light (if it’s a store that is busy in the A.M., then it’s a go another time situation).
The chemo that we got today was only one medicine that shouldn’t make her sick, and probably won’t drop her counts too low. The first chemo treatment was three medicines. So far, so good, feeling really blessed and staying positive 2 treatments down, 4 to go till imaging!
We will update on Wednesday to let everyone know how the 24-48 hour period went after this weeks chemo treatment.
March 30, 2012
Tuesday evening and all of Wednesday Marlie didn’t quite feel like herself. She was laying on mommy a lot and just was really lacking energy which left her really tired. Yesterday and Today however she was back to herself full of energy and bossing everyone around. They said the first 24-48 hours after chemotherapy are when she would feel the effects of it if at all. At least we got a feel for it and know it is only really one day and maybe an evening where she is tired, though at least she isn’t in pain or suffering at all during those periods. She had an appointment today where she gets her chemotherapy with the oncologist to check her “levels” which they need to continue to monitor as specific ones can’t go below a certain point. Currently, all those specific ones they are watching which chemotherapy impacts are doing really good and her body is at this point still able to fight off infection. That is great news to know the first round of chemotherapy did not hurt her levels! The next chemotherapy appointment is Monday but this week she will only be getting 1 of the 3 chemo drugs and the one she will get does not impact the important levels at all.
Marlie’s Aunt Jennifer and Uncle Charley came in from Brooklyn; unfortunately Charley has a cold and hasn’t been able to see Marlie. Marlie was very excited and had a lot of fun today playing with her Grandpa Steve and Aunt Jen! Right before bed we had to give Marlie her blood pressure medicine, she will not take it and fights it like nothing else. The doctors said to hide it in her food or drink, which at that point it was too late to do since she had dinner and was not going to eat any more. The only other thing they said to do is hold her down, shoot it in the back of her throat with a syringe, hold her nose closed, cover her mouth and massage her throat to get her to swallow it down. After 2 tries we got it down but man was that such a stressful and awful experience. She is flipping out and it makes us worry its going to be real traumatic for her let alone increase her blood pressure. We are going to try tomorrow to hide it in her food (ex. spoon full of oatmeal) and hope she doesn’t notice and get sketched out. Thank you again to everyone for their support during this time! It really helps lift our spirts during those every now and then periods when we feel down and stressed. We will update Monday and let everyone know how Chemotherapy went and give the updates from the appointment.
March 27, 2012
Marlie started chemotherapy yesterday. To begin, Robert and Hollie were given a tour of the facilities and introduced to the doctors and staff who will be taking care of Marlie. This week she was given a dose of three medications. Most of the following weeks will be just one medication (except week four will be the three again). They were told that the 24-48 hours following chemo are when Marlie will feel the most crumby. As of writing this (Tuesday afternoon) she was doing well, and has even had a bigger appetite than usual. Seven to ten days after the three med sessions like yesterday Marlie’s white blood cell count will be the lowest, putting her at an increased risk for getting a secondary illness. Therefore all visitors must be in tip-top health. I will post again when I hear more. Thanks so much for reading and thank you always for your well wishes and help.
Posted by Jennifer