Past Updates

July 31, 2004

Jimmy had another good night last night and was disconnected until 6 AM this morning. His LFTs were down a bit today, thank God, as well as his potassium.  Hopefully that's the beginning of a new downward trend. Jimmy was in a good mood today and is still eating well.

Dr. Guinan said that today's numbers reinforces the thought that Jimmy's LFTs are not rising due to a virus, and that it is more likely to be a bit of GVHD, or the medications. Jimmy needs to be on an antifungal antibiotic to help prevent a fungal infection. This is the medication speculated to be causing the rise in LFTs, however, the new medication they switched to can cause rigors (extreme shivers) and an immediate fever. Jimmy has not had that happen yet.

Dr. Guinan also said that if GVHD occurs in this manner (LFT involvement) it would likely be okay because the chemo and radiation did not get all of the leukemia cells, and the donor's cells are trying to kill them. That is the graft, the donor's cells, attacking the host, Jimmy's leukemia cells. She said if that is the case, it's is a good thing that the donor's cells are doing that, and that is when you do want GVHD to occur. She also said, unfortunately, that the donor's cells are more easily able to identify all of the 'good' cells that Jimmy has, and it's harder to find the leukemia cells. We still do not know if this is the case or not, however.

Grannie also had a good question to ask this morning. She wondered why we have to be so careful for so many months after BMT if Jimmy has such a good neutrophil count (ANC). Dr. Guinan said that neutrophils help fight bacterial infections, but it is the lymphocites, another type of white blood cell, that help fight fungal and viral infections. Lymphocites do not 'work' for 6-12 months after transplant. So that is why we need to be so isolated while we are here and when we get home. Dr. Guinan also said it is very likely that Jimmy will be readmitted to Childrens even after he is discharged, and we're still in the Boston area, because the majority of kids get a fever (as a way of dealing with what's going on in their body) and need to be treated with antibiotics in case of infection.

KIDNEY: BUN (average range:5-18), J.'s 40, 29, 28, 27, 28. Creat. (average range: .2-.4), J.'s was .4, .3, .3, .3, .3.

Potassium (Average range: 3.0-4.5), J.'s was 5.75, 5.90, 5.48, 5.53, 5.4.

ANC-2,430, platelets-47, HCT- 31.8.

July 30, 2004

Jimmy was able to be unconnected again last night until 4 AM. Jimmy shows his displeasure by making a grunting/growling sound when every now and then the tubing gets stuck between his toes. He woke up in a fairly good mood today.

One very precious, new habit that Jimmy recently started is rubbing mommy’s eye lashes before he goes to sleep, either for the night or for a nap (they sleep together in Jimmy’s crib). He puts his hand on her cheek and ever so gently rubs his thumb back and forth across her eyelashes until he falls asleep, and then his hand rests upon her cheek until he changes position. It is so precious and sweet.

Jimmy also learned how to clap, sometimes for himself, and how to sanitize his hands. There are several pumps of hand sanitizer in the room and around the unit. He has learned how to push down on the pump, the rub his hands together.  How clever he is.

Jimmy's numbers are still mixed today: ANC good, kidneys and potassium about the same, and liver up/worse. At rounds today Dr. Guinan said that it would take 4-5 days to see a difference in Jimmy’s numbers if it was the medicine making the LFTs rise. Also, they are going to repeat a few blood tests that check for viruses (i.e. CMV, Hepatitis C). Unfortunately they don’t have to tools to test for some viruses. She also said that if it was a virus, chances are that the LFTs would go up much more quickly. For example the LFTs would look something like: 20, 50, 300, then 3,000. As you’ve seen, Jimmy’s numbers haven’t increased in that pattern. Finally, she said if it is a bit of GVHD, Jimmy is keeping it under control at this point, and that’s a good thing. Jimmy’s Cyclosporine level today was 160.

The rest of the family moved back in the Best Western as of last night. The Ronald McDonald House will only take 4 people per family, so that is why when Jimmy is discharged we can't stay there.

Also, bilirubins are very important to liver function, and luckily those have been in the normal range. We'll let you know if that changes.

Potassium (Average range: 3.0-4.5), J.'s was 5.75, 5.90, 5.48, 5.53.

ANC-2,100, platelets-47, HCT- 33.1.

July 29, 2004

Jimmy was pretty cute again last night at 11:30 PM eating a Devil Dog.  Last night was also the first night since we’ve been here that Jimmy was able to go to sleep without having his central line being connected. For the first 6 hours he slept, he was able to roll freely without us worrying that the tubing was going to pull on his line, or kink or bend causing the pump to beep. He was connected at 4 AM, but that was okay. Today is also Jimmy’s Uncle Bobby’s birthday, Rick’s brother, the uncle James Robert is named after.

Jimmy was quiet and tired today, but generally in a fine mood. The numbers for today are mixed. ANC is great, potassium is coming down (Bicitra is working), kidneys stayed about the same as yesterday, and liver got worse. Dr. Guinan said that the AST and ALT (the LFT’s) are going up for one of three reasons: GVHD, a virus, or one of the medications that Jimmy is on. They are going to switch one of his medications to see if that helps. All of the blood work to check for viruses was negative, and Jimmy is not showing any other signs of GVHD. She said many times the numbers just get better/go down, and they never really find out the reason they went up.

KIDNEY: BUN (average range:5-18), J.'s 40, 29, 28. Creat. (average range: .2-.4), J.'s was .4, .3, .3.

LIVER: AST (average range: 2-40), J.'s was 118, 115, 164. ALT (average range: 3-30), J.'s was 160, 175, 233.

Also, bilirubins are very important to liver function, and luckily those have been in the normal range. We'll let you know if that changes.

July 28, 2004

Jimmy had a better night last night and was hungry for a Devil Dog at 4:30 AM. He ate half of it, he was so cute. Jimmy woke up in a better mood and is more lively so far.

His kidney function numbers were a bit better/lower today, but his potassium still going up. AST was down a bit, and ALT was up a bit.  Hopefully it was the Cyclosporine, but acute GVHD is always in the back of their mind for the first 100 days, especially when the liver numbers are involved.

Here are yesterday's (first number) and today’s (second number) to compare. We will add this info each day, with the last number being the current day's level. That way you can follow the trend, too.