Here's a great picture of two beautiful sisters.
Good news from Matt today! Josie is doing very well on the low dose of steroids and has been feeling pretty good! She has been able to eat and drink normally without nausea and she's been having many great moments according to her dad. She is still tired much of the time, and can't do too much physically but there was a lot of hope in today's conversation. This may be just what we have been praying for. The medicine she is receiving in DC is mobilizing her immune system to fight the tumor! Go Josie go! XOXO
Here's a great picture of two beautiful sisters.
Good morning friends and family. Again, on behalf on Matt and Alissa, Josie, Sam, Josh and the whole Grove/Lubas families, thank you all for your continued love and support since Josie’s diagnosis with brain cancer.
I had a moment to catch up with Matt tonight and, as always, he is clinging to hope with all of his might, as is Alissa. But the reality is that Josie is not feeling well. As each day passes, this tumor is taking more from her than faith, medicine, and time can put back in. Matt is going to take leave from work for as long as he needs. He and Alissa want to create as many moments with Josie as they possibly can. They want to both be available to care for Jo each day, hour, and minute with all of the love that their hearts can produce.
Please continue to pray for Josie and her family. Pray for peace, hope, and the precious gift of time. Each moment is precious. We love you Josie!
Just got off the phone with Matt as he was pulling into home from today's DC trip. There was hope in his voice. There was optimism at today's meeting. It all boils down to time.
The MRI shows that the tumors have not grown in size. The tumor in Jo's back has not changed at all. The tumor in her brain has not grown but has enhanced. There is inflammation in the brain, and that is expected. The presence of the tumor itself causes inflammation and so does the drug that Josie is taking. The doctors think that the inflammation is from both. The good news is that Josie's immune system is mobilizing and ready to fight. There are tons of white blood cells in her cerebrospinal fluid! The drug is eliciting a response from Josie's immune system, which is exactly what it's supposed to do.
Unfortunately, Jo continues to have lots of nausea. She's taking steroids and they are making her feel better. The steroids control the inflammation. The drug may be working, but in order to qualify for another treatment, Josie needs to be weaned off of the steroids. So that is where time becomes a factor. Can they wean Jo off of the steroids so that she feels well enough to get through her days and make it down to DC for another treatment. More of the drug will cause more inflammation, and the cycle of symptoms returns. It's a complicated fight between Josie's immune system, the drug and its effects, the tumor, and the steroids.
The plan going forward is this. Wean Jo off of the steroids over the next two weeks and see how she feels and responds. She will have a follow up trip to Hershey next week but no trip to DC. If she feels well enough without the steroids in her body, she'll get back to DC in two weeks for another treatment, and hopefully her immune system can gain some traction and we will begin to see a REDUCTION in the size of the tumor! That is the miracle to which we are still clutching!
Josie, you and your family are so strong. Keep up the fight...we are all behind you as always with love and support and most of all hope. XO
Unfortunately we haven't heard from anyone regarding Josie's weekend MRI as of yet. Matt and Alissa expect to hear when they return with Josie to DC on Wednesday night and into Thursday. I will keep the blog updated as information becomes available.
Josie has not been feeling well as of late. We're hoping her symptoms are being caused by the tumor being inflamed (and being attacked by the new medicine) rather than tumor growth.
Thank you all for your continued support and thoughts!
Josie is home today and the whole Grove family is together again! After a long and arduous stay in the hospital, Josie was allowed to go home after her MRI. Matt and Alissa rotated in at the hospital, staying by her side the whole time. The MRI kept getting delayed, and Josie had to be sedated for the MRI so our poor young lady had to go for whole day without eating! She was grumpy and rightfully so! We were all frustrated. Unfortunately, we won't know the results of the MRI until after the holiday weekend. The MRI needs to be sent to Washington DC and read by the doctors there.
Everyone enjoy their holiday weekend! Take comfort in knowing that Josie is home and resting with her family, and everyone is feeling much better!
Jo still not feeling well today. After showing some signs of distress that concerned the doctors, Jo was taken back to Hershey tonight for observation and treatment. Matt and Alissa are by her side and Jo and Sam are happy here at our house with their cousins.
It is possible, however unlikely according to Matt, that the shunt is still malfunctioning. It is more likely that the main tumor in Josie's brain is growing OR that it's inflammation in her brain that is the problem. It is well known that this new drug causes inflammation. Inflammation can cause these symptoms, and the inflammation is alleviated with steroids so Jo is back on steroids now. Our hope is that with steroids, the inflammation will subside and Josie's medication will start to work and shrink the tumor. That is what we all need to pray for.
Josie is stable now and comfortable. I just got off the phone with Matt. She is going to have a 3 hour full brain MRI tonight to evaluate the tumor. We will know more tomorrow.
Hi everyone! Thank you all for being patient. I know it has been a while since I last posted. It was a busy week at the beach with all of the kids. I didn't need to stay connected to Jo and her family through blogging. I was with her, and with my brother and my sister and our parents, and all of our beautiful children, and just being together as an extended family was enough. It was everything. It is everything. It just went too fast.
Jo had her ups and downs at the beach this past week. She unfortunately spent much of the week nauseated and on the couch. She did have some great and shining moments. Times out with just her family, times on the beach and at the pool with her cousins, and time to relax and talk with everyone. She did lots of cooking in the sand as Jo loves to do, rolling sand meat balls and making sand pizza. Yum. When she felt well enough she would get up and pass out kisses and hugs to everyone, always spreading love. There was no better sound or moment for me than having Jo walk up behind me and give me a tap. I would turn around and see those big blue eyes looking up at me, peeking through her strawberry-blond bangs, her arms outstretched, "hug hug Uncle Jeff," she would say. I squeezed her hard each time and never wanted the moment to end.
Midweek, Matt and Alissa took Josie to Washington DC for another treatment. They were gone overnight and we all got to enjoy Sam and Josh, giving them some extra attention and TLC. When Jo returned, she seemed to have even more nausea. Her shunt was acting up before the trip and had to visit Hershey. The doctors thought it was flushed out and functioning well. This past Sunday, Jo really started to feel poorly and Matt took her to the Reading ER and then up to Hershey. She had another operation on her shunt to fix a blockage and repair both sides of the shunt. We are hoping and praying that this gives Josie some relief from her headaches, lethargy, and nausea. She handled everything like the super star patient she has always been through this ordeal. She fights hard and loves hard, just like her parents.
There is no quit in this fight. There is hope. This new drug has great promise. We just need Josie to be in the fight long enough for this drug to work its miracle. We will get there together, as a family, and as a community, rallying around a very sick but very special young lady whom we all love and adore. Thank you all for your support. I can't say enough how much it means to Matt, Alissa, Josie, Sam, Josh, and our entire family. XO
Matt and Alissa had a busy week but I was able to catch up with Matt today for a bit. Josie was down in DC this week again for a re-evaluation. For the most part, Matt said she is "back to baseline" meaning that she is feeling as well as can be expected. Still some dizzy spells but overall much better than Sunday. She was up to her usual tricks and for the most part had a great and normal week. Alissa took her to do some pottery and Matt had some one on one time with her too, also working on some art projects!
The doctors think Josie's not feeling well on Sunday may have been the result of her shunt being blocked. No one is sure of that, but Josie felt much better Monday through today. Josie did well at her follow up exam. No negative effects of the drug at this point! Matt said that this is good news because we need that drug to ramp up her immune system and that will take time.
We had another great visit with Sam and Josh while Matt, Alissa, and Jo were in DC. Josh is quite the talker lately and Sam is feeling more and more comfortable staying with us and paling around with "big sister" figure Anna.
I spoke to Matt tonight. He called me on his way into work. Josie is not feeling well, and had a hard time getting off the couch today because of dizzy spells. The dizziness could be from the tumor growing in size. We're hoping that the medicine in her system is starting to attack the tumor to help it shrink instead of grow. No one is really sure how to feel or what to do at this point. I'm hoping that Josie feels better tomorrow after a good night's sleep.
Josie needs your thoughts and prayers. Please continue to keep Josie, Matt, Alissa, Sam, and Josh in your hearts and on your mind.