Getting there!

Overall, Jordan is feeling good. He started to get lethargic on friday and blood tests revealed that he was really anemic again. They started a transfusion friday afternoon but he developed a fever as a reaction to something in the blood. It's not a big deal but they had to stop the transfusion. We returned to the hospital this morning to try again and everything went fine. He gets such an energy boost from these transfusions. He has been running around the house like a maniac all afternoon. His platelets never got low enough to require a platelet transfusion and it appears that they are on the rise. We expect that his neutrophils will begin to fall in the next few days. As you all probably know at this point, that is the scary one because he cannot receive a transfusion for it and it renders him with no immune system. Pray for no fevers in the next few weeks and then we will be in the clear! Love, Lara and Jim

Last dose

It is such a relief to know that the last of the really toxic drugs went in today. Jordan will probably start feeling worse before better but at least no more is going in. He had a red blood cell transfusion today. Those are hard because it takes about four hours so it is a long stretch of waiting for a 3 year old. Everything went fine though and we are home for the rest of the weekend. We go back on monday to see if he will need a platelet transfusion. Jim and I intend to become regular blood donors after this and I hope all of you will consider it as well. It is so powerful to see a strangers blood saving your child's life. Jordan is completely bald again and could care less. Example: (Jim)"Jordan, I can't wait until your hair grows back." (Jordan)" Oh Dad, I don't care." Another example: (Noah)"I don't want to get a haircut!" (Jordan)"Ha Ha, I don't have to get a haircut!". Love to all, Lara

Almost there

Jordan is in his second week of the daily chemo and everything is going well. His last dose will be on saturday. Typically, patients cell counts start to drop after they have finished the series. His counts are already much lower but not in the danger zone yet. Kids often get anemic and need a transfusion during this phase as well. Even though the chemo will continue for three years, it will be such a relief to get past this stage. We are counting the days and praying for no fevers or unforseen hospitalizations. Lara and Jim

A long week

We went to the hospital on wednesday to start the next round of chemo. Jordan had a really hard time fasting for the spinal this time. It was one of the hardest mornings I have had with him at the clinic since we started this. He was just hysterical and I ended up pushing him up and down the hallway in his stroller for an hour. We got through the spinal and had lunch at the hospital and then went to the inpatient floor to be admitted for his overnight chemo infusion. They start by giving IV fluids for 2 hours. About 1 1/2 hours into the fluids he began complaining that his port hurt. The nurse checked it twice and said it looked fine. As she was preparing to start the chemo, I checked his port and was horrified to see his chest protruding with a swelling the size of a baseball. The needle had slipped out of his port-o-cath but was still under the skin creating an infusion of fluids under the skin. We were sent home and the fluid absorbed overnight. We were re-admitted thursday morning and started all over again. Everything went fine and we are now back home. Unfortunately, Jordan has never gotten used to getting his "pokey" and now he is even more scared of it. The biggest challenge of this hospital visit was that we were in a group room for the first time. There was another family there with only a curtain separating us. The other boy could not sleep and was up all night. His mother let him watch TV all night and with the Harry Potter movie blaring in my ear at 3am I didn't get any sleep either! Good night, Lara

Doing well

Well Jordan has bounced back like only the young can. His neutrophil count was 500 on saturday so we were able to stop the IV antibiotics. Today the count is 1200! He is also feeling great and has a close to normal energy level. We start the next round of treatment on wednesday. He will have a spinal on wed and then be hospitalized over night while he gets a long chemo infusion. If all goes well, he will come home on thursday and then will go in every day for a treatment for 2 weeks. We expect that he will feel terrible again and he may require a transfusion if he becomes too anemic. The good news is that this is the last of the nasty stuff. We'll let you know how it goes. Lara and Jim

Home Again

Yeah! After a long 4 1/2 days in isolation at the hospital we got to bring Jordan home today. His neutrophil count is still extremely low (48) so he is on I.V. antibiotics which we have been trained on giving at home. He will go in every other day to check his counts and we can stop the antibiotics when it is over 200. The next round of intensive chemo starts when his count is over 1000 so for now he is not on chemo. He is still extremely lethargic but seems to have turned a corner and is improving a little every day. We are so thankful to have everyone home together again. Love, Lara and Jim

Hospitalized

Well it has been a hard week for poor Jordan. The chemo really started to hit him hard on tues/wed of last week. He is extremely lethargic and just lies in bed or on the couch all day. Sunday he took a turn for the worse and spiked a fever of 101.9 at 9:30pm. We had to take him to the ER since it was after hours. His blood pressure was really low at the ER so they monitored him for a while to decide if he needed ICU or not. Fortunately at 3am they determined that he was stable enough to be admitted to oncology and not ICU. The main concern is that he could develop a bacterial septicemia since he has basically no immune system right now (latest neutrophil count is 35). The protocol in this situation is to start blood cultures and keep them hospitalized and on I.V. antibiotics for at least 48hrs. So far the blood cultures have been negative (praise God!). If they are still negative tomorrow then they will send us home on antibiotics. He has not had a fever since sunday night and his blood pressure has stabilized. He still feels terrible though. It is so sad to see this normally exuberant boy just lie in bed too sick to move. This is a very common complication during this phase of treatment. In fact, all the nurses seem suprised that this is only our first hospitalization post-diagnosis. There is a lot to be thankful for. Whenever we are in-patient and I see the other kids I am struck by how lucky we are. I will let you know when we are home. Lara