Kutter's Daily Blog updated by Kutter's Aunt Julie. Please come back often to stay in touch!
On Wed. Dec. 12 Kutter experienced two seizures and his mother Monique called a friend because she did not know what was happening and was frightened. Her friend told her it sounded like he was having a seizure and that she should call 911. Monique immediately called her mother-in-law Patti and the two took Kutter to Rady Children's Hospital.
He was admitted immediately and he had his third seizure. A CT scan was requested and the results that afternoon showed that Kutter had an approximate 4 cm brain tumor blocking the ventricle tubes that allow fluid to drain from the brain. Consequently, fluid was building up in Kutter's brain causing swelling and the seizures.
Rady Children's Hospital scheduled Kutter for a procedure to insert a drainage tube in his head to help alleviate the swelling, discomfort, and immediate danger from the pressure. They also took a specimen of the tumor to find out if it was malignant. The procedure was performed late afternoon on Dec. 12 and Kutter was doing better as soon as he began recovering from the procedure.
Thurs. Dec. 13 - Kutter was much improved from the day before. Though he was mellow from the drugs, he was more responsive than he had been the previous week. A considerable amount of fluid had drained, most of it from that morning. It looked like a half-pint of fluid had drained, so Kutter must have been feeling much better.
Kutter had some visitors on Thursday. In addition to his Mom and Dad (Monique and Rob), he had his Grandparents Robert and Patti, myself, Pastor Dave Cairns and his wife Michelle and AJ and Linda Tota.
Kutter had an MRI done around 7 p.m. to make sure that there are no surprises and that they are dealing with an isolated tumor. That is our prayer!
8 p.m. and Kutter is back in his room and both of his parents are with him; the rest of the family goes home late.
Fri. Dec. 14 - Today we anticipated that we would receive the results of the biopsy. Unfortunately, we have to wait another day. We are waiting for the results to know whether the tumor is benign and we have the option of chemotherapy or whether it is malignant and will require surgical removal.
Kutter is in decent spirits today, according to his Mom, Dad, myself and Grandma Patti. We hope that tomorrow we know the results of the biopsy.
Sat. Dec. 15 - We found out that there is 95 percent chance that Kutter will have surgery on Monday morning. They will take another specimen and do an immediate biopsy. They will decide under which category his tumor falls, and from there they will know if it needs to be completely resected, or if chemotherapy will be enough treatment.
Kutter has always been picky about who holds him. It's always taken him awhile to warm up to people, like most little ones. But because he has had to lay in his hospital bed for 3 days now, and doesn't undertand why, he reaches his arms out to anyone to pick him up. The hardest part is watching him go without the amount of affection he is used to, and knowing we can't give it to him right now.
Sun. Dec. 16 - Kutter is feeling better and waving to everyone. He has his toys around him and a few books that his visitors can read to him.
Mon. Dec. 17 - Kutter's family and pastor headed down to his room around 6:30 this morning to see Kutter off to his operation. He was putting his hand to his ear, which is his way of playing 'telephone' and saying "hi." And in response his family members put their hand to their ear and say "Hi Kutter, I love you!" It's good to see him still remembering family games.
He went into surgery around 7:45 a.m. Family and friends gathered in the waiting room for the 5 hour surgery. Rob [his dad] called into the room around noon to get an update and found out the surgery went well, it was over, and Kutter had a PNET type tumor. They had resected what they could. Everyone headed to the other waiting room outside of Kutter's room to await his arrival. A social worker came by and asked Rob and Monique to come with her and she told them that the type of tumor Kutter has is very aggressive and there is a 30 percent survival rate. For the best care, he should be taken to St. Jude's Research Hospital in Memphis, Tennessee. Here, they can do radiation on children under three. Following radiation is chemotherapy.
Rob and Monique came back to the waiting room to relay the bad news to the rest of the family and friends. We are all in shock.
His parents have decided to go through with St. Jude's. His treatment will last at least six months. The plan is to send Monique and Kutter on a plane [paid for by St. Jude's] Grandma Patti will accompany Monique and Kutter out to Memphis. I [Rob's sister] will take a leave of absence from SDSU and drive out to Memphis to be with Monique and Kutter during his treatment. Rob will follow in a few weeks after personal affairs are in order.
Tues. Dec. 18, 10 a.m. - Kutter pops his eyes open, the anesthetics finally wearing off. He is moving his arms and feet. He has an MRI scheduled for 7 p.m. and this will show how much of the tumor was successfully removed. They nurses say they want to ween him off of the air tube at his own pace. If he does so by the end of the day, then they will reschedule his MRI for another day.
Today they told us that if St. Jude's catergorizes Kutter's tumor as a glioma type, then he will not qualify. All of Kutter's paperwork and results are being sent for consideration and we will know within a few days whether or not he can be admitted to St. Jude's. The chances are still high though for Kutter's acceptance.
Wed. Dec. 19 - The MRI results came back today! They successfully removed all of the tumor! This increases the effectiveness of the radiation and chemotherapy. Still no word from St. Jude's.
The breathing tube was removed today so Kutter got to suck on his binky and the tag from his bunny [BunBun].
Thurs. Dec. 20 - Today Kutter had a taste of normality. He had some formula and Pedialyte in the morning. Kutter had his picture taken with Santa today. Later in the day he also had the drainage tube removed because they believe the fluid is draining properly now. That means we can hold him! Grandma Patti got to hold him and last night his mom held him for 3 hours and he slept the whole time.
Fri. Dec. 21 - Kutter got a surprise today. As an early Christmas present, he got a portable DVD player and 3 new Baby Einstein DVD's to add to the ones he's grown up with this year. This should help stimulate his brain and provide entertainment.
His Great Aunt Angel [Grandpa Robert's sister] got to see Kutter for the first time since his admittance.
I've added a few pictures from the hospital. He only looks scared because the part of the brain that controls his eyesight is right next to where they operated on Monday. In time, his eyes will get better.
Sat. Dec. 22 - Kutter was clapping and putting his hand to his ear a lot today! Dad got to hold him, and Kutter smiled.
For the past few days Kutter has been running a fever and having a hard time keeping his food down.
We found out that Kutter definitely has a PNET tumor, confirmed by St. Jude's. So he has been accepted and Kutter, Monique, and Grandma Patti will fly out on Jan. 2. I will start driving out on Jan. 1 to get a head start.
Sun. Dec. 23 - His head has been leaking a bit so they're doing some tests to see if it is brain fluid/what's causing it. He is still running a fever and having trouble keeping food down.
Mon. Dec. 24 - Monique called from the hospital tonight to tell us that the doctors think Kutter has meningitis. That's where the membrane around the brain and spinal cord swells. They don't know if it is viral or bacterial. Most people have been taught that "bacterial" illnesses are better than "viral" because bacteria can be treated, but such is not the case with meningitis. Bacterial meningitis is deadly. So we are hoping that it is viral. Viral can't be 'cured' but he can be treated with pain medication and put on antibiotics just in case. This might set the trip to St. Jude's back.
Mon. Dec. 31 - Kutter doesn't have menigitis! He had an infection where his sutures are and was leaking a bit from there. They drained the fluid and redid his stitches and he has been feeling much better. On Thurs. Dec. 26 he was moved from ICU to hematology where he can enjoy the privacy of a four-walled room. They staff doesn't have to check him as often so he also gets a lot more rest. He's been eating well every day and clapping his hands, playing with toys and sitting up on his own.
As for St. Jude's, the trip is still on. Monique, Grandma Patti and I will fly out on Jan. 2 at 6:20 a.m. Guy Penwell, a good family friend, is shipping my car out because of the winter weather and it's dangers. Robert will follow in about 2 weeks with the Explorer they bought from Joyce Rogers at a very generous price discount. Monique, Robert, Kutter and Grandma Patti will stay in the Target housing, and it looks like I've found an apartment only 4 minutes from St. Jude's. Both my mom [Grandma Patti] and I will scour the city for jobs!
I read an article on another family going through close to the same thing as ours. Their daughter, now 10 months old, was diagnosed with Medullablastoma [same as Kutter's] when she was 3 months old. They are currently at St. Jude's for treatment. Her name is Natalie Tanner, and her Web site is nataliesfoundation.org. I contacted them and the mother, Kristen Tanner, wrote me back and she has nothing but praise for St. Jude's and the doctor Kutter will have [Dr. Sanders]. We are hoping to meet up once at St. Jude's.
Tonight AJ and Linda Tota are hosting a New Year's Eve/Going away party at their house for everyone to get together and celebrate Kutter's awesome support system.
Note: "myspace.com/kutterkapaska" community website has been deleted because Kutter isn't 14 years old. We are working on posting recent photos from St. Jude Children's Research Hospital.