12-04-2007
Update from Vickie and Kailtyln Mays: "Kailtyn and I got to spend time with Jack after his treatment today. He woke up smiling for his pudding and juice. He held Kalityn's hand and we took some pictures. When the lady said 'smile Jack,' Jack said, 'Jack smile.' What a little angel he is.
I am so happy he is improving and will be able to spend precious time with his family. I was again blessed to spend time with him today. Megan is such strong amazing mom.
May God bless you all very much. Our family prays and thinks about him everyday."
12-02-2007
I saw Jack today and he's been making progress is regaining his speech. Today he was watching the movie Ice Age 2 and said "there's the squirrel" when the little squirrel (the one who is always trying to get his acorn) showed up on the screen. We were also able to sit him at the top of the stairs and help him scoot down the stairs on his butt. So he is finally regaining his speech and motor skills little by little.
12-01-2007
From Jack's Mom: Tonight Jackie had another moment of subconscious speech tonight. He said very softly while watching Happy Feet 'I wanna dance.' Craig and I both got very excited and asked him if he wanted to dance and he burst into tears. Anyway, it's a good sign of things returning.
11-29-2007
I saw Jack yesterday briefly. He is doing as well as can be under his circumstances. He cries a lot because he is so super frustrated at not being able to speak anymore or run around with his big sister Robynn. It is so nice to see him smile, which he always does when we tell him it's time for dinner! Although figuring out what he wants to eat is a whole 'nother story. We did find that he has a big liking for raisins though, and he smiles when he see's them coming. He also loves to watch movies, since he is so limited to what he actually can do now. He's watched Finding Nemo and The Road to El-Dorado more times than I can count, but he still loves them every time. He also loves Dora the Explorer. He has made some progress as far as his one side of his body not functioning. He has started to use his left arm/hand again to do things. It shakes tremendously when he does, but at least it's a start. His mother and father told me that he actually is starting chemotherapy today. Luckily it can be given to him orally so he won't have to endure anymore poking or prodding to get that. He does still have his 5 days a week radiation treatments in Pittsburgh though. Thank you all for your prayers and I will keep you up to date.
11-28-2007
I (Jack's big sister Lauree) haven't seen Jack since Saturday and miss him terribly. He's been in Pittsburgh with his mommy Megan gettings his daily radiation treatments. He will be coming home tonight for the evening! I cannot wait to see him and will update you all as to how he is doing once I see him!
11-21-2007
Jack's chemotherapy treatment has been rescheduled to start next Monday. He's been in Pittsburgh since early Monday morning and will be coming home this afternoon to spend Thanksgiving at home with his family. He will resume his radiation treatments on Friday.
A lot of people have been asking how Jack is handling all of this... Well, Jack doesn't really understand what's going on. He cries a lot because he can't talk right now (we're hoping that comes back once he's undergone more radiation treatment) and therefore he gets really really frustrated. Half of his body seems to be not functioning too (we're also hoping he recovers that after more radiation). So he can't walk right now either and that frustrates him too. Before this happened he was a very independent kid.... for example, if someone (really other than his parents) would pick him up without asking, he would immediately say 'put me down!' and flail until we did because he just wanted to be free to run around. So he is incredibly frustrated since we have to do everything for him now. His speech therapist is going to give him a device that he can push buttons on a small computer and it will speak for him. So we're hoping that eases his frustrations a little. Because of where the tumor is, he sleeps 80% of the day (because of the tumor's location), so we at least take a little comfort from that, knowing that when he's sleeping he can forget about reality for a little while.
11-19-2007
Jack and his mom left for Pittsburgh this morning (he was home for the weekend with his family) for Jack's second week of radiation therapy. Jack is also scheduled to start his chemotherapy treatments today too.
11-17-2007
Jack hasn't been able to speak in days. We taught him how to sign the words "yes" and "no" in American Sign Language.
11-09-2007
Jack is home for the first time in two weeks. He get's to take breaks on the weekends from his daily radiation treatment. Chemotherapy begins on 11-19-2007.
11-08-2007
Around October 21st he started having flu like symptoms. We rushed him to the hospital on October 28th after he vomited for almost and entire week straight. At the time, we were just worried that he became dehydrated and the hospital could give him the fluids that he needed. On the morning of October 29th, after an evening of I.V. fluid, he started having seizures. They did an immediate scan of his brain and found the unimaginable: Jack had a massive brain tumor in the center of his brain. The doctor's in Erie did an immediate proceed to drain the fluid in his brain that was causing pressure in his head, which was causing the seizures. Then he was immediately flown via helicopter to the Children's Hospital of Pittsburgh. Once there, he had brain surgery to make a hole in his third ventricle so his brain fluid could drain into his body to relieve the pressure. A biopsy of the enormous tumor was also taken. After an agonizing week of waiting, the even more unimaginable was relayed to us: Jack has a severely malignant and terminal form of brain cancer known as glial blastoma or glioblastoma. His tumor is located in his thalamus, extending into his hypothalamus, and midbrain. Because of it's central location and the basic life functions those parts of the brain control, his tumor is inoperable. Jack is scheduled to begin radiation and chemotherapy Monday November 12th. The doctors have made it clear that the treatments will only buy him time. To quote the oncologist, "we need a miracle". Jack has been given approximately 9-12 months to live. If we were to forego treatment entirely we have been quoted two months. Though by looking at him recently I doubt it would even be that. Over the past four days he has declined dramatically, going from walking with assistance, talking, and peeing in the potty to being unresponsive to anything that I say to him. The left side of his body is very weak as the tumor is pushing heavily on the right half of his Thalamus. He is very quickly fading away from us. The best we can hope for is that the radiation will shrink the tumor enough in the short term that we can have a fairly normal Jack this Spring and Summer. Until then we are going to make the most out of these last few months we have together and use that time to prepare for his passing.
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