More Pictures of Jordan

Just thought we'd share some of our latest pictures of Jordan.


Probably watching his favorite video - Cubix.


As we've said, he's not been a happy boy lately. The steroid makes him lethargic. The good news is that he only has 4 more days of steroid left, and he's been getting smaller and smaller doses for the last week. We've been assured by the doctors that he'll be back to his normal self in a week or so. We're already seeing some of that.

A Week Into Phase 2

Had the second of 4 chemo injection into his spinal fluid today because they switched us to mondays. Once again we had to starve a hungry boy, and his port was blocked when we first got in, so it took a little longer than expected. Apparently it's common to have the ports get blocked. They first take an Xray to make sure nothing is wrong with it. If the Xray is fine, they inject TPA - the same stuff stroke patients get. It disolves the blockage and you're back in business.

Everything else went as planned. His blood work numbers look good and should remain so throughout this phase. The results also came back from last weeks 28 day bone marrow test, and they showed less than 5% leukemia cells. This was expected, but it's nice to hear, anyway.

Starting next week, we'll be switching to Tuesday appointments, so next chemo injection in his spine is in 8 days.

He's been tired a lot lately and also complains of being sore. He's slowly being taken off the steroid, and the soreness is often a side affect of last month's Vincristine. They tell us to expect him to start feeling a lot better, and we've definitely seen him begin to eat less. A few days ago he actually ate a donut. We were so excited!!! He just hasn't had a taste for sweets since he started on the steroid, so we're taking the donut as a sign that he's starting to get his old tastes back.

Jim & Lara

Day 28!

We made it! The morning started off a little rough because Jordan wanted breakfast just like Noah. It is so hard to deny your kids a bowl of cereal! We ended up putting Jordan in the stroller and walking with him for 2 hours. Jim walked for one hour then I drove and met them and we switched places. We ended up walking to Childrens hospital. Once there things went smoothly and they were able to squeeze him in early. The fact that he was standing in the hall screaming "I want a quesadilla!!" at the top of his lungs may have expedited things. His cell counts look really good and we expect the results of his bone marrow to be good as well. He begins the second phase of treatment today. It is called the consolidation phase and will also last 28 days. He is on a new drug called Mercaptopurine that he takes orally daily. The side effects are minimal. A key component of this phase is weekly treatments of prophylactic chemo injections into his spinal fluid. Again, he cannot eat breakfast before these but hopefully that will get easier as he comes off the steroids. We also have earlier appointment times for the next three weeks which will help as well. It will take 1-2 weeks for the effects of the steroids to subside and by early Oct we should have normal Jordan back. Yeah!!!!Thanks for all your prayers and good wishes. Love, Lara and Jim

We had a nice weekend at home with Jim's parents Ed and Sheilah here. We are now counting down to wednesday. The steroids have transformed Jordan into someone we hardly recognize. Even is voice seems different. He is very lethargic and miserable. The only things he enjoys right now is eating, stroller rides, and his new Cubix DVD (thankyou to everyone at allrecipes.com for that one!). We know that this is temporary and we just can't wait to get the real Jordan back. Please be praying for us on wed. He will be sedated for a bone marrow biopsy and spinal tap at 12:50pm. That means we need to go all morning with no food. The good news about wednesday is that we start tapering off of the steroids! Yeah!!! Lots of love to you all, Lara and Jim

Day 21

Yesterday was day 21 of Jordan's chemo treatment. 7 more days and then we get to turn to page 2 of his treatment protocol. Our hospital trip was uneventful. His cell counts look really good which means that his bone marrow is repopulating very well. It also means that we don't have to be quite as paranoid about him getting sick. Our biggest challenge right now is the side effects from the high levels of steroids that he is on. Each day the effects get worse and taking care of him becomes more demanding. He is not sleeping well, he is very moody, he eats constantly and has gotten so heavy that it is hard for us to lift him. We are counting the days for him to get off of these things. We have to stay at the current dose until day 28 and then we taper-off over 10 days. Jim's parents arrive in town today which will be very helpful. We also continue to receive tons of help from our wonderful neighbors who are cooking dinner for us and picking up groceries when Jordan has an emergency craving for olives! With love, Lara and Jim

A bald boy

We had a great weekend at home. Jordan's blood counts looked really good on saturday and he was a champ about having "a pokie in his port". After it was over he told me that it doesn't hurt to have pokies in the chest. The good counts mean no transfusion for at least a week. It was a little bit disappointing to discover Jordans hair falling out in clumps this afternoon. We knew that it was going to happen but it is constant visual reality of what he is going through. We decided to give him a really close buzz cut and he looks quite cute. The big brown eyes and long eyelashes really stand out now. We'll get pictures soon. Love, Lara and Jim

Eating machine!

I am thrilled to report that we have had two very uneventful days. Noah started kindergarten and loves it so that is a huge relief. Jordan's appetite on the steroids is so phenominal that I had to share with everyone a typical breakfast. His hunger wakes him up earlier every day (6:15 this morning). Then we go straight downstairs and begin eating. Today he had: 1 waffle, 1 bowl of cereal, 1 can of olives, 2 boiled eggs, 1 sandwich, and 1 bowl of mac-n-cheese. This is all before 8am. He will take a short break at this point before launching into the post-breakfast snack that will carry us straight into lunch. He is getting a huge tummy and a round face. The doctors tell us to go ahead and let him eat like this because next month the drugs he will be on are likely to make him nauseous. We have an appointment for bloodwork tomorrow to check his cell counts. Thanks for all the great comments. We love hearing from everyone, Love, Lara

Rough Start, Good Ending

Jordan's 14 day tests were today. This is where he gets another dose of chemo, and they put him under so that they can do a bone marrow biopsy. We were a little concerned that it wouldn't be less than 5% bad cells in the biopsy. On the 7 day test, there were still 35% bad cells. If it's over 5% on day 14, they change the treatment plan and include some chemo drugs with stronger side affects. It also means many more hospital visits.

The morning started out pretty bad. Jordan's bad experience last Sunday at the ER combined with a food deprived ravenous 3 year old (he couldn't eat due to the surgery), made him rather cranky. He wasn't happy about going back to the hospital, and would trade off saying "I don't want a pokey" and "I'm hungry."

Now the good news...
His surgery went fine.
The last couple of blood tests have shown his "blast" count is zero. It's expected, but good to see.
His 14-day bone marrow test came back with much less than 5% bad cells. They could even start to see healthy cells being created. YEAH!!! We still have a long road ahead, but this was a nice bit of good news. The next bone marrow test will be at day 28 (2 weeks from now).
Finally, the results of the test taken back when we were first admitted came back. It was negative for any bad genetic markers, and even positive for one that about 25% of kids with leukemia have. This particular one usually means that the kids respond well to their treatment.

Thanks for all the thoughts and prayers.

His blood counts look low as expected, so they want to have us go in on Saturday for a blood draw to make sure he doesn't need a transfusion before next Wednesday. Next Wednesday will be a routine chemo appointment.

To the ER

Well we had a great day yesterday and today we were back at the hospital. Jordan has been having chills and his temp was one degree higher than his normal. While it wasn't a fever, the on-call oncologist felt he should come in and get checked. It was all downhill from there. This was the first time Jordan has had blood drawn through his port and he completely freaked out. The ER nurse was unable to get blood (we later found out it was her 4th time ever at trying a port). The decision was made to give him valium and have the IV specialist try. Most kids get mellow with valium but not Jordan. He became combative and hysterical. Fortunately the IV specialist had no problems. The blood counts looked fine and the blood culture won't be back for 24-48hrs so we were sent home. After todays experience we are very concerned about how Jordan will cope with the next several visits. He came home today saying "I don't like that place, it is scary". He also doesn't want anyone touching his port. Fortunately, his temp is normal, he is doing fine, and for now there is no sign of infection. With love, Lara and Jim

It was so nice to have a somewhat normal day at home yesterday. Just to see Jordan in his own bed or playing with his brother is a joy. Today we were back at the hospital for most of the day. It takes several weeks for the bone marrow to start producing blood again and the blood from his initial transfusions is dying off so he needed another transfusion today. We were somewhat discouraged to hear that his bone marrow biopsy from wed showed 35% blast cells (he needs to be under 5%). I was assured by the oncologist that this is very common and it doesn't change his prognosis or treatment. What it does mean is that he needs another biopsy next week. If that one is over 5% then they put him on a more intensive chemo regimen. He is also very sore from the wed biopsy. The pain and anemia have definately taken the wind out of his sails. Please pray that he would improve over the weekend and would have a good result on wednesdays biopsy. Thanks, Lara and Jim

9/1/2004 We're Home!!!

Yeah!!!! We're Home!!!

Jordan's surgery went well. We got a great 8:30 am appointment, and luckily it wasn't pushed back. We only heard one "I'm hungry" before they had him under. This one took the wind out of his sales for the rest of the day. The bone marrow test makes his lower back a little sore, and we're told by the nurses that the "port" in his chest probably feels like a pulled muscle (at least that's what the older kids who get them tell the nurses).

It took the hospital 5 hours to discharge us and we had to make 3 loads to the car to get all of the stuff out of our room: 10 mylar balloons, 4 stuffed animals, 5 lego things, 20 books, several robotic creatures, and about 10 videos and DVDs including the entire season one of "Sponge Bob Square Pants" episodes....oh ya, and one small boy.

We'll get the results of the bone marrow test on Friday when Lara takes Jordan back into the hospital for a transfusion. His red blood cell count is at 22. They'll let it go to 20 before a transfusion (a normal person's is between 30 and 40). Even though many of the leukemia cells are gone, it takes 7 to 14 days for the body to start reproducing red blood cells like it used to. Hopefully, this will be the last transfusion he'll need before his body starts working properly.

They also told us not to be alarmed if the leukemia count is not less than 5% on this 7 day test. Only about 1/3 of the kids have it gone by day 7. If it isn't gone, we'll check again on day 14.