Posted on July 20, 2017
Posted on July 20, 2017Thursday July 20, 2017
Sorry we haven't posted in a while. Our family of 5 is very busy. Grace is doing good. She can't stand the heat, but who can. She is as lazy as every. We are trying to push her to walk more, but that's a struggle with her.
Ken and I have decided that this the last round of her main oral chemo. Her doctor wants to start to ween her from all the chemo's so we are starting with the most dangerous. After her next MRI (September), we will probably start to remove more. It's a really hard decision to make, but we knew it was coming at some point.
Today, Thursday July 20, the local Knights of Columbus is hosting a blood drive for Grace and another local child battling cancer. It runs from 2-8pm at 79 Pascack Road in Washington Township, NJ. If you are local, please stop in and donate.
Posted on July 7, 2017
Posted on July 7, 2017Kenneth Skuches Thursday, 6 July 2017
Finally! Grace is healthy and doing well. Actually, everyone is healthy and doing well !!! Grace had IGG on Wednesday which makes for a long day but no complaints from us. Her numbers seem to be climbing even when back on the chemo. She is eating well and has become a chatter-box. She is starting to talk more and more! At least Mommy and Daddy can understand her. It's so amazing to see her progress. I am always apprehensive about getting too excited with good news because as we have experienced in the past, a single blood test can be devastating. However, today.... I want to enjoy, bask and take advantage of the good news !!!!
Those who are friends with me on FB probably saw the post about one of the local unions putting the blow-up rat in front of the hospital. These pop up all over the City when union workers are not being used. Meant to shame the non-union workers and the people patronizing the business. Really? I have to believe most people like us would rather be just about anyplace other than in the hospital. I can't imagine a signal person saying... lets go to another hospital because we want to support union workers? I have to believe they would get a bigger bang for their buck at the Walmart. If there is good news to this scenario... Grace kept pointing to the big rat, saying "there" and giggling.
The Skuches' had a wonderful weekend! It was just the five of us and we headed Upstate NY for some clean air and fun. I took Grace on one of the 4-wheelers and we tooled across the field at lightening speed! Or... something close to that in her mind! She laughed and smiled the entire time!!! John and I shot off Estes rockets!!!! OMG... did that bring back memories. We tried in the past and have not been very successful. Estes makes a very complicated, safe ignition system that had to be scrapped for an old fashion 6-volt battery and some wire. Not a single misfire!!! John and I went up the mountain on the 4-wheeler in the pouring rain. I kept telling him we are lost and tried to teach him how to figure out where he was. The property is laid out in a grid of stone walls... I told him to get to the wall and head up the mountain and follow the wall... He interrupted my instruction and told me... Daddy, just turn around and go back the way we came! Come on!!! He's not even 5 yet!!!! As the 4th approached we headed back home because for the past year, John reminded me how upset he was that we didn't take him to the Ridgewood 4th of July Parade (next town over). So I promised him we would go this year. We arrived early and staked out our spot and I asked... are you excited to go to your first parade. He reminded me that he was in two parades at Ridgewood Nursery School. I stood corrected. Finally about 40 min after the start, the bands made their way past our spot. Needless to say, Ridgewood puts on a heck of a parade! After about 10 minutes, John told me this was the longest parade ever! There must be million of people marching! Too bad!!! I loved it!!! and... he would learn to love it as well ! We finished this great weekend with a visit from the ice cream truck. I never seen John get his shoes on so quickly! We all swam, even Grace (waste deep because of her port). And finished the holiday with a big BBQ. It ended up being such a good weekend!!! I am still smiling !!!
Again, thank you all that pray and provide support to Gracie and our family! There are so many of you that make a difference in our life!!! God Bless!!!
Posted on June 27, 2017
Posted on June 27, 2017Monday June 26, 2017
Grace was joined at clinic today with her big brother John. Both were very excited to go to the art studio at the clinic. John headed right over to Nitza the art director and Grace got her labs done and dressing changed.
We got to see Dr. Garvin this visit. Tumor Board hasn't officially met yet to discuss Grace, but her MRI has been looked at by Dr. Garvin, Dr. Anderson (neurosurgeon) and Dr. Ghadahli/Dr. Odell (neuro-ophthomolgists). All agree there is no new disease. There are some things on the MRI that are mentioned in the report and Dr. Garvin went over them with me at clinic today. Everything is explainable and no concern of disease.
From this review of the MRI, the discussion of continuation of chemotherapy has arisen again. Dr. Garvin is concerned about the long term effects of the chemo. He wants us to consider first removing the etoposide/cyclophosphimide. She would continue with the other oral drugs and avastin. Then we would remove the other oral drugs. Then remove the avastin. We would remove all over time, getting her to her third birthday.
Ken and I are nervous, but we understand that she has to come off treatment at some point. We will talk about it over the next week or so and finally make a decision.
Her WBC, platelets and hemoglobin were great! But Grace will need an IGG infusion next week as her counts are just out of range. She will go back on avastin July 10, since it is on hold from her recent shunt revision.
We thank you all for your continued prayers and positive thoughts. Grace and our family have been through so much and your support has helped us at every turn. We ask you tonight to keep Owen and Lylah-Jean and their families in your prayers. Owen gained his angel wings on June 22. He was a patient at Columbia with Grace. Lylah-Jean gained her angel wings on June 17. She was a fellow ATRT warrior. Also, please add Ariana and Corinne to your prayers and positive thoughts. Both amazing ATRT warriors have relapsed and progressed. Both are exploring more options. Once you relapse, your chances decrease drastically from an already dismal prognosis. This warriors are still fighting and need even more support.
God Bless and Have a Happy Fourth of July