Providing smiles and support to children with life-threatening illnesses and their families.

 
Please note - All children on this page are posted with Parental/Guardian permission.  If you know of a child that could use some extra attention on an Urgent basis, please email Mary with the information.

 

From Devin's Journal

Thursday, January 5, 2006


Yesterday was just not a good day.

I was glad we were able to get Devin into the neurologist earlier than February 22nd, but the news was certainly anything but good. He has ordered an MRI of his brain, as well as another sleep deprived EEG. The MRI is next Monday evening. The EEG is not scheduled until the 25th.

Here are the options: 1.) Infection, but highly unlikely as Devin has no real symptoms of illness and as of 12-15 had good counts...........hindsight makes me wonder why they didn't do another CBC last night.
2.) Some type of wierd seizure activity. He has had some
seizures before, but nothing like this and the neurologist agreed that he doesn't believe its seizures, just wants to rule them out.
3.) Something in his brain that SHOULD NOT be there. The MRI will tell us this.
4.) Permanent and ongoing brain damage due to chemotherapy and radiation treatment. If this is what it is the dr. said he felt it would get worse due to the fact he was NOT showing these signs before finishing treatment.

So, all options basically suck. Randy and I are shocked, although I guess we deep down knew something was up. We will deal with whatever it is.

Randy's MRI was horrible. He sees a knee specialist next week. He was told he has the knees of an 80 year old retired football player........not good for someone not quite 40. He doesn't seem stressed about that at all. Knee problems don't seem like much when you're looking at your little boy's life turning to crap right before your eyes.

Please continue to pray for Devin as he undergoes these tests. We appreciate you all.
 

From Vannah's Journal

Monday, January 2, 2006 11:32 AM CST

As most of you know we did end up back at Club Med. We still don't have any definate answers but she is in the right place and getting the IV cocktail of the 3 high powered antibiotics to rid off whatever this may be. She did start with vomiting last night and fevers as high as 103.5 this morning. All her labs are up but most likely from the infection. Her coags are up enough to cause alarm despite being on the vitamin K. It is really a shame that she feels so horrible today because her favorite cartoon is having an all day marathon. Dora, of course is her favorite and Savannah's missing all of it. I will do another update tonight (if the ultra sound shows anything new) or tomorrow if things are still ahnging out. Wouldn't it be just so wonderful if her new liver came while we are here? I\Please pray that she will get her gift of life very soon so he doesn't have to continue to suffer. That is the hardest thing for me, watching my baby girl hurt and knowing I can't do a thing in this world to releve it for her. I love you all- Me

 Tuesday, January 3, 2006 6:15 PM CST

Savannah is still very sick. Her fevers spiked out at 103.8 today. Not sure if the anti-biotics are working or if they just need another 24 hours to be able to kick butt!? Anyhoo, ERCP was scheduled for tomorrow but after the doc examined her they had her in the OR within the hour. They did find some sludge in the main bile duct so the stent was replaced. They of course tried to get pics of the biliary tree in the liver in case there was a blockage above the stent but her liver is too scarred for any readible pics. If her billi startes going down with next labs then we will know it was just the stent. If not then they may have to put a drain in. Her blood cultures grew out gram negative rods within 12 hours so there is a definate infection in her bloood stream. Thankgoodness we got here before she became septic. What is odd is that her white blood cell count had stayed normal but then again when you don't have many liver cells I guess it isn't. Her GGT & Alk PHOS have also continued their decent reflecting how very few ceels she has left. Right now things are much better than the situation could be and hopefully they will continue to get better. Once she has gone 24-48 hours with no fever she will begin a 21 day course of IV anti-biotics. That means another PIC line. She is still very dehydrated (even after bolises) and it is taking numerous sticks to get any blood from her. She is such a trooper. The nurses sticke her and dig and restick her and dig some more and she never even whimpers. They lowered her anti-rejection meds to let her body help fight but it is so scarey and dejavou for me. With her 1st transoplant this is kind of how it all started. She got an infection, coukldn't shake it and then things snowballed from there. I am especially concerned with her meds being lowered that her body will once again attack her liver, or at least what's left of it. Please pray that she will get well soon. I love you all and will update again tomorrow.

Please say a prayer for Alex, the brother of Angel Christopher Kline, who passed away from a brain tumor.  Alex just had brain surgery to remove a brain tumor. 

Saturday, December 31, 2005

Sorry for the long delay in updating. We are now in our third week of radiation. There have been some ups and downs. Alex began to vomit immediately after his first treatment. With medication the nausea has been somewhat controled. Most of his hair fell out during these last few weeks. He has lost a bit of weight down to 39 pounds. He has a lot of mucus which many times causes him to vomit. We are trying to get him to eat as much as possible. Alex has amazed the doctors and technicians at the hospital. He lays perfectly still for his treatments. As far as we can see he is responding. The doctors say that he is doing well. This past week Alex got strept throat. Antibiotics were making him vomit even more. They finally gave him intravenous antibiotics which has resolved a lot of the vomiting. Our goal now is to get enough food and supplements in him to keep his strength up. Her has moments where he is extremely tiered and others where he has a fair amount of energy. Overall I see that Alex has the desire and the will to get better. Keep up the prayers and good wishes. With God's help we will all celebrate Alex's FULL recovery.

Fr. George

Please say extra prayers for the Kline family. Alex's web site is: http://www.caringbridge.org/visit/alexander