Tuesday, January 27, 2009

Mom, I'm sorry

Jake has been running a fever since last weekend. Our family has the same crud together except that this is potentially life threatening for Jake. Knowing Jake has low immunity, we were concerned.

Tonight, despite theraphy of Tylenol approved by the doctor, Jake's temperature spiked to 102 and we were told to bring him into ER. While I was strapping him into the car seat to take him to ER, Jake said "mom, I'm sorry." I didn't know what to say except, everything was all right and we're going to help him get better. There were so many emotions running through my mind but the deepest emotion was my unconditional love for him.

We finally got released from ER at 11 PM. Jake's ANC is getting better. His cultures from yesterday came back negative and we got a dose of antibiotics. When we got back home, we gave Jake a sponge bath and put him to bed. I hope and pray that he feels better tomorrow.

Tuesday, January 20, 2009

Skipping Chemo

Jake went in for his treatment on Monday but we left without getting his chemo. His blood counts showed that his neutrophil was down to 430. Average range is 2500 to 7500. He has very little ability to fight infections. We are in a dangerous territory where if he gets a viral or bacterial infection, he may be spending some time in the hospital.

We will go back on Thursday hoping his counts are better to proceed with treatment. This is not good news and the first time he has been off track. Sometimes, I take it for granted how fragile Jake is because he is so resiliant.

He spent some time at popa and grammy's house today. He was talking up a storm and busy doing various planned activities devised by his loving grandparents. They reported that Jake was a picture of health. We hope he stays that way.

Please hang in there Jake, mom and dad love you.

Sunday, January 18, 2009

Jake's Birthday Party

Jake is turning 2. We had a birthday party for him today. He was getting excited as we decorated the 4th floor party room with streamers and balloons. The party was loud and full of energetic children on a sugar high. Jake loved every moment of it. I know he enjoyed himself because after everyone left and we cleaned up the room, he still didn't want to leave. What a party animal.


We always love party stunts.


We all sang happy birthday.

Aunty Kathy with the Mayer's girls.

Our dear friends, Don and Jamie.



Nana's balloons.

Sunday, January 11, 2009

Crazy man

Although Jake was showing signs that the chemo was working through his body, he still wanted to be crazy man. Jake is getting steadier on his legs. He's getting so good now that he decided to walk backwards and sideways. Jake's attitude is simply amazing.

His true Korean side is starting to come out. He loves spicy food. We took him to Jazz, a cajun restaurant and he tore into their Shrimp Dianne.

Thursday, January 8, 2009

Clinic Visit from Hell

We had another clinic visit today. He is in another phase within Consolidation where they try to kill any remaining Leukemia cells. It was an excruciating day. Because he had a bacterial infection two months ago, they put us in isolation. We were in a small room (approximately 10 by 10) with no ventilation. We also had to have the doors closed. For those of you who are parents, picture yourself in a room with a two year old for four hours and he can't go anywhere. On top of all that, they had problems with heating and our room was a burning inferno. Jake was unhappy and we were doing this to him during his nap time. Children's Mercy is a great hospital but I think they get really busy and sometimes forget the patient is a scared little person who is uncomfortable at best with what is happening to him. Mark and I feel very powerless to help him when we are there.

Next time, we will talk to them and take a different approach. I don't want Jake to have negative feelings about the clinic. He has 3 more years left with them.

Jake is doing great. He is getting back his independance that he had long ago. He is walking everywhere and don't need mom or dad helping him. He is becoming quite a communicator. The other day I asked him what he did at poppa and grammy's house. He replied "I watch TV. Sunny Patch." He gave Mark a box of Whoppers and said "Chocolate. Open?" Mark asked him "how do you know it's chocolate?" Jake replied "yeah, it is." We have to start watching what we say.