Well today we had Kelly’s MRI and I just got off the phone with Dr. Jason and our results are STABLE!!!!!! This is what we were praying for. We will continue on with current treatment - keep on trucking Kelly, she’s amazing.
Thanks for all the prayers
God Bless
Ellen
OK so I lied about the every two weeks. Where to begin, things have been busy as usual but that is ok with me, keeps my mind busy. Kelly is doing well, she has her ups and downs but don’t we all. Kelly has started the Temodar treatment and this chemo is a little harder on her bone marrow then we had hoped. We have cut the dose in half in hopes that her counts do not drop and she does not have to go down to the hospital for transfusions and does not get any infections. It’s all about Kelly and making sure she has a good quality of life and not living her life in the hospital. We have our next MRI scheduled for 7/22/08. I am already starting to PMS about it. For those of you who are not cancer people PMS is a term the hospital staff uses prior to MRI’s. Pre MRI Syndrome and boy do I have it. We just got back from 7 days at Ft. Myers beach. I wish I could say it was as nice and wonderful as our Disney trip was. It was kind of stressful, Kelly was not feeling well and nothing like an illness to put a damper on the vacation let alone an illness in a cancer child. She threw up for the first time since December after awaking from a nap. I was ready to come home early but called our Oncologist and he called in something over the phone. She seems to be back to herself and we were at the clinic yesterday and Dr. Jason does not seem to concerned about it. I’ll go with that for now or try to anyways.
Aunt Katie got married at the end of May and Kelly and Molly were flowers girls along with their cousin Caroline. Kelly did very well and all the girls looked beautiful. We had all the cousins push Kelly down the aisle, it was very touching. Kelly had a great time at the wedding. She tried so hard to stay up and kept asking when the dancing was going to start. She heard so much about Uncle Jimmy’s wedding and the dancing, she was determined to stay up for the dancing this time. For Uncle Jimmy’s wedding she made it to the dinner and just missed the beginning of the dancing but Molly made up for her and everybody else that did not have happy feet that night. Molly would have made my dad proud. Kelly loves Johnny Cash and the band played several Johnny Cash songs. Kelly danced her feet off and it was a pure joy dancing with her and also watching her. I had to ask her if she wanted to go home and she hesitated but it was 10:30 pm and our day began at 8:00 am.
Kelly also participated in her Kindergarten graduation. Gary and I had decided to keep her in Kindergarten, she only attended school for two months. Her birthday is in August so she is right at the cut off and this way she can participate in the entire year of K activities. She will be the oldest in her class rather then the youngest and why make her struggle. She learned in 2 months what all the other kids had 8 months to learn.
We are planning a variety of activities this summer, trying to make up for last summer when she slept on the couch the entire summer or was in the hospital. Next up is Kiddieland and Great America. My cousins have a place in Michigan and have so graciously allowed us to stay there for a few days in July. We have bought fishing poles and have spent some time at Tampier woods, hopefully weather permitting we will make it to Maple lake this week. The girls really enjoy fishing and I enjoy watching them.
Kelly is doing well with her walking, I think all the swimming in the backyard has helped loosen up her muscles. She was fitted for an AFO and by the time we went to pick it up 2 weeks later, it needed to be re-sized. The doc said that has only happened to him 2 times before, where the child has made so much progress that the brace needed to be re-sized. For those of you who might need to know, Nordstroms sells split sizes in shoes. We need a shoe 2 sizes bigger for her brace. She walks very good with the brace and the doc said he would guess that 6 months max for the brace. She already seems like she wants to start running.
That’s all I can think of of for now, other then the MRI on July 22nd. Please keep this date in the back of your minds and I know you will all be praying, but I must say it - please pray for stable. I get sick of the thought of it, I had an anxiety attack the other day and needed to leave the house and change what I was doing to get my mind off of it. Every little thing Kelly does I read into and think about it. I know that I should not do that, but easier said then done. That is the life of a cancer mom. Pictures of the Florida vacation are posted on the web-site where the others are located.
Thanks for the thoughts and prayers I know everybody has for Kelly.
Ellen
Hi Everyone,
Sorry I have not updated in a while, things have been very busy. We are starting to see some of the side effects of the radiation that Kelly received. I took her to the eye doc the other day and Kelly is completely blind in her left eye. She has a “damaged visual cortex, secondary to the radiation”. That’s what the official diagnosis was. She does see some shadows and can see out of the side, but her sight will not return and we are unsure if it will get any worse. She is also near-sided in her right eye so Kell got some really cute glasses. Now her and Molly can be twins. This really bothered Gary, it did not even phase me. As long as she has one good eye that she can see out of. I did ask if she will be able to drive when she gets older and the doc said yes but may have some restrictions. When you but things in perspective this is minor - to me anyway. We also made our first trip to the endocrinologist, Kelly’s TSH level was high. The endro doc put her on synthroid, just like her momma. The positive side to this is that because her TSH is high that indicated that her pituitary glad is working, it’s sending TSH to the thyroid, the thyroid is not taking it. This is a sign of a Hypothyroid. This could be inherited from me or from the radiation - does it really matter how? She takes the pill every morning like a champ - we take it together. We also went over what most kids who have had radiation to the head, neck and spine usually experience. In a nutshell, we will most likely be really good friends with our endro doc. Nothing that can’t be controlled, and we will deal with if and when they arise. Kelly is in school and doing well. Everyone in the school knows her and when we go around town to shop she almost always sees someone who yells “HI KELLY”. It always makes her smile and me too. She is kind of the town celebrity, although I wish for different reasons. It could be worse, she could be known around town for being a tramp - lol. She is developing more social skills, she missed an entire year because of the treatment. Kelly’s class is having an “graduation” at the end of the school year and every child has a part. The theme being what they want to be when they grow up. I will brag a little bit here, Kelly said she wanted to be “just like her mom”. So for her part Kelly will dress like a mom and recite a couple of lines about what a mom does. I’m excited for her to do this. This will be huge because she will have to get up in front of everyone to do this.
We started another chemo last Tuesday, Temodar. This will help in fighting the tumors from a different direction in addition to the Avastin/Irinotecan. It’s an oral chemo that I can give her at home for 5 days every 28 days. Very little side effects, but the little peach fuzz she had started growing back is now gone, oh-well small price to pay.
The mayor of Willow Springs contacted me the other day. He wanted to let me know that the village is having a classic car show in August with some of the proceeds going to Kelly’s fund. I thought that was very nice of him and the village. I’ll attach the link to the village to view the details, try and make it out if you can there will be a booth for Kelly.
We are far from being out of the woods, but are headed in the right direction. We go day by day some days hour by hour. I ask for your continued prayers and support for my little girl battling this horrible monster and being so brave while doing it. She never asks why and that in itself makes me so proud of her. It’s wasted energy to feel sorry for yourself and that way we have more energy to battle the monster. The only thing she ever talks about that I have a hard time dealing with is when she talks about “remember mom when I used to walk” I look right at her and say “Kelly you can still walk, you just need to work harder on your balance” I know what she is talking about, but I told her to say “remember mom when so and so happened. Not to use the surgery, radiation, chemo,weakness as a crutch or a piece marker in time. I feel like that does nothing but give excuses. She will walk again, she is already starting and doing very well in short distances. Just like a baby when they begin to learn to walk, she has to re-lean everything again. I see her at physical therapy and my hearts breaks and at the same time I could not be prouder of her. She works so hard, I can actually feel it. I watch her struggle with different muscles and different activities that the PT uses. She refuses to give up - no matter how tired or hard the task is, this kid will not give up until she has completed what was needed to be completed. The look on her face, the look of accomplishment that she gets for herself. We all could learn so much from her, she’s amazing, if we only had half her drive, half her determination.
I ask that everyone continue to pray and to also thank God for what Kelly has accomplished so far. I think sometimes we lose sight of what He has already granted us and we need to remind ourselves to be thankful for Kelly and for everything you have in your life. I can say I personally have learned so much, just by being Kelly’s mom - I feel honored. I’ll end on this note - I am also grateful to be Molly’s mom, that little stinker. If she was not so cute, I would have hung her by her toenails by now. Just tonight after I gave her a bath, she snuck out the back door and was picking my flowers that I just planted in the mud with no shoes or socks on just pajama bottoms and totally covered in mud. She said, mom I pick these for you for mudders day cuz I love you. How do you get mad at that, you don’t she just goes back in the bathtub and I go back to Home Depot for more flowers.
One more thing - the web-site is back up and running. I will no longer send out e-mails, you can just go to the web site to check for updates. I’ll try to update as often as possible, at least every two weeks unless something major happens, like Kelly gets cured next week.
Remember Failure is not an Option
I CHOOSE to be positive
I CHOOSE to push on
I CHOOSE to fight this monster with my daughter
I CHOOSE not to feel sorry for myself
I CHOOSE to have my faith
I CHOOSE for this journey to make my family stronger
I CHOOSE to believe Kelly will endure
Ellen
One word - STABLE. We could not ask for more. This is fantastic news to Gary and me. We will proceed with our current treatment adding another chemo agent Tremodar on Tuesday.
God Bless,
Ellen
The pictures taken during Kelly’s Make a Wish trip to Disney can be found in a group room at
http://caringforkelly.snapfish.com/snapfish You will need to register to see them.
Hello All,
We made it home safe and sound from Disney. Make a Wish sure does know how to take care of you. You actually almost forget why you are there. We had such an incredible time, words could not even describe it, but back to reality–smack in the face. (more on the Disney trip in another e-mail, to0 much to go into detail)
We go to Childrens tomorrow for treatment. Oh-Well life goes on and so does Kelly’s treatment. I downloaded all my pictures tonight and Kelly’s also. She took 147 pictures and they are really good. I plan on putting them on a slide show and sending them out to the family soon.
Gary and I met with the IEP team at Willow Springs school this morning and Kelly is scheduled to start school on Monday. She was on the high end of average and above average on all her tests - that is without any formal schooling in over a year. The plan is to also pass her on to first grade in September. The teachers feel that Kelly will be able to catch up by the end of the year and if not we can do one-on one over the summer. Kelly will also have a personal aid to assist he with her walking and anything else she may need. That made Kelly feel very comfortable. That was her biggest concern, but she wanted to start tomorrow and go all day. I only have her signed up for half day.
We are also going ahead with hearing aids. Her hearing loss is a concern and they will only help her with school. She is ready, she told my mom that when she was at Rogy’s (daycare) she would take her baths at night, brush her teeth, read a story and go to bed. That is what she wants to do again, she does not like taking tubbies in the morning and wants to go too school.
I am glad that we made the decision to send her to the public school rather then the Catholic. Willow Springs school only has a total of 348 kids K-8. The school nurse is having an all school meeting with the students on Friday to talk about Kelly and a note is going home to the parents explaining her situation in case of chicken pox or other things that the kids siblings may have at home and they will need to alert the school. The meeting/note will state what she has gone through, but is now doing better and is no different then any of them. Kelly’s kindergarten teacher told me today that the kids are so excited about her starting they keep asking her every day, is today the day Kelly starts. The kids are also arguing about who will sit next to her. I told Kelly this and she giggled and is very excited about starting. I told her we can go out and buy a new outfit for her first official day of big girl school. What a milestone for her and myself.
I went and dug out the pictures of my first day of kindergarten and showed them to Kelly and she enjoyed that, asking lots of questions. (It was nice to have those to pass on to her thanks mom) I have a feeling Monday will be very emotional for me, more then it just being her first day of kindergarten. Just think last year she was just coming home from the hospital from a surgery that she was given a 50/50 chance of survival. We are far far from over, but this is the next step in a “normal” life for her. I am grateful that Kelly is able to have the experience of kindergarten, I now pray for first grade but one day at a time, certain days it’s one hour at a time.
I am starting to get e-mails from other moms with kids who are now in Kelly’s situation with refractory tumors for medulloblastoma. All were asking about her new treatment because their doc wants to start this on their child. These women are from all over the country. I joined a group on-line a few months ago when it was determined that Kelly had remaining tumor. Kelly is the first in the country to be treated with these meds for medulloblastoma. This has been used in other BT with great results. Dr. Jason went to a conference a couple of weeks ago thinking more kids would be on this protocol. He was correct, but Kelly is further along, tomorrow will be treatment number 4. It’s a yahoo discussion group and at times I find every informative but at other times to real if you know what I mean.
Anyways, vacation was awesome and today was a great day and I’ll take that and be happy. Molly wanted to know when she can start school also, she was cute about it. I told her we will find her something. She said, “mom I’m little and I need to get big, so I need to go to school like Kelly.” Kelly’s next scan is April 22nd. Choosing Hope.
Love,
Ellen
Click on the thumbnail to see a bigger picture.
Mom and Kelly enjoying a mani and pedi at the spa getting ready for our “big” Make a Wish trip to Disney on Wednesday. Kelly had a ball, she got her nails painted pink and purple every other finger. She was such a big girl sitting there soaking it up. We have matching toe nails, but not finger nails. I didn’t think I could pull off the pink/purple fingernails but went with the pink/purple toe nails. I truly enjoyed just watching her smile. (Thanks Amber for the great day, it’s something I will always cherish.)
On Friday, March 7 Mom Ellen had the day to herself, the first one in a long time, as Molly and Kelly headed downtown. This time it was for some fun with Grandma Carole and Aunt Patty. Click on the thumbnails to see a bigger picture.
Well today was the day that we met with the Dr.’s regarding Kelly’s new course of treatment. I have to say after a weekend of letting this all set in, I am in better place then I was last Thursday. We are still in a much more difficult place then if the biopsy came back as scar tissue and do not want to give false hope, but why would things be easy, after all I was an Eastman before I got married and had to learn everything the hard way.
When we sat down with Dr. Jason, I had 14 studies that I wanted to go over with him - boy did he earn his money today. He was great and went through each study and went over the pros and cons of each study and he answered every question I had for him. He told me he felt like he was back in front of the medical board. What amazed me is he knew almost everything about all the trials and the specific drugs that were being used in these trials. We decided as a team what the best course of treatment would be for Kelly, that’s what I respect so much about him is that he considers us all a team. It’s not just his decision and that’s it, he listens to what you have to say as a parent, a family member and a friend of the family.
Kelly will not be going on any actually trials, but we will be using drugs from these trials, making it up as we go along and what Kelly’s body tells us what works and what does not work. Not all the drugs will be chemo drugs. The theory behind that is we have already hit her with very high doses of chemo and there are still active tumor cells present. We will be treating her with a drug that will actually go to the tumor and cut off blood supply to the tumor, in theory killing off the tumor. The other drug is a chemo drug, but Kelly will be receiving such a low amount that she really should not see many side effects that she has seen in the past and should continue with how well and strong she is feeling today.
We will still be doing our “Make A Wish” at the end of March and I am free to take Kelly to Kentucky to see Aunt Debbie in between treatments or anywhere else for that matter. Her counts should not drop so low that she will be able to continue to get stronger and stronger and go places without me worrying as much about her catching something, I have my shopping partner back. She will be getting these drugs every two weeks at the day hospital (outpatient) and it will take about 4-5 hours each visit. There is not much documented evidence on this cocktail of drugs for medulloblastoma, but it has been used in other brain tumors with some response, so I am asking everyone to pray louder and louder to God. We are in unfamiliar territory here and need to just take this day to day hour to hour.
I have come to the conclusion that we have our miracle, and her name is Kelly. What we need to pray for is a new form of treatment for Kelly to be part of that will go down in the medical journals as a new way of curing medulloblastoma. My mom told me God has three answers - yes, no, and not right now. I think His “not right now” answer for us is because Kelly needs to be part of something new, something that needs to be invented so kids down the road who will be in Kelly’s situation will be able to be cured like Kelly will be.
Ellen
I am sorry to inform everyone, the biopsy has come back as disease. There are not many options for Kelly so we need to pray for a miracle.
Ellen
