REMISSION...most likely

The preliminary results of Alex's bone marrow biopsy are in - again, these are the "preliminary" results, so further study could change things. However, Alex's oncology team is quite confident in these results.

Alex is in REMISSION, with only 3-4% leukemic cells in his marrow. Anything under 5% is considered remission. So, if the further testing increases the leukemic cell concentration to over 5%, we would not be in remission, and would do a secondary "induction" phase.

BUT, since we are in remission as of the tests we have right now, we are moving forward with the next phase, "consolidation". This is EXACTLY the same as the lymphoma treatment, so we have seen it all before. The only difference is that there is a chance Alex could have his PEG Asparaginase through an IV instead of as two simultaneous shots in his legs.

So, no chemo the rest of this week, as we let his ANC rise to 750 - it was only 66 today. We will continue with "consolidation" while Alex's marrow/cord blood options are investigated further. Once we have narrowed down the field, we will meet with the transplant team, and start figuring out the transplant schedule. Most likely, mid-August to September.

Alex hasn't eaten anything all day, and has slept most of the day away...after 16 days of not leaving this room, I would try and sleep as much as I could too.

Also, the doctors ordered a chest x-ray tomorrow morning, which means, hopefully they will put Alex's chest tube on seal again, and then if his lung stays inflated, they will pull it out tomorrow. At this point though, I'll believe it when I see it...

Too Many Cooks...

The last 12 hours have been a bit confusing.

1) I was told last night, that Alex's chest tube would be on suction until Saturday at the earliest, and that they would be doing daily chest x-rays to make sure everything was ok. This morning, a different set of surgeons said it would be Friday that they attempt the chest tube seal, and we have not seen an x-ray tech, and there are no orders for an x-ray today.

2) I was told yesterday that Alex was done with his C-Diff, and that they only needed a sample to confirm that the cure worked. This morning I have been told that TODAY was the last day of treatment, and that we needed a sample before they would let us out of the room. THEN, I was told that the surgery team "strongly felt" that Alex should be on a 14 day C-Diff protocol, instead of the standard 10 day. THEN, I was told that our main team would make the determination.

So we wait...

In the meantime, I was told that the lung mass was *not* sent for culture, like it was supposed to by the surgery team, as *clearly* indicated on Alex's chart. So, while they know it was not cancerous, they don't know exactly what it is. Alex's oncology team is *livid* at the screw-up, and are hoping that the slice of the mass that was sent for stain, will give them some sort of answer. So, we will be treating with a broad base anti-fungal, instead of a targeted therapy, since they aren't positive what type of fungus it was.

Frustrated

Today is day 16 in the hospital. That should be enough of a frustration, however we have more to grumble about this morning.

The surgeons want to leave Alex's chest tube on suction until Saturday morning. Then, put it to water seal, and then, remove it late Saturday. So Alex has another 2 1/2 days of pain with this horrible tube coming out of his side.

Alex had to be de-accessed, and then re-accessed yesterday. The nurse was quite rough, and my brave boy kept telling her it hurt, and to slow down peeling off the tape. Then, she didn't access it the first time, and had to wiggle the needle until she got some blood flow.

Last night, Alex spiked a fever of 101.5. The nurse gave him tylenol, and he is fine now, but I am worried about infection after his lung surgery...

On the positive, the mass that the doctors took out of in Alex's lung is not cancerous. They could't get it to grow, but they are 99.9% sure it was a fungal ball. They will be treating Alex with heavy duty anti-fungal medicines for the next 2 1/2 weeks (pills we can take at home, if we ever get out of here)

Finally

Finally, and hour and a half late, Alex was given his "sleepy milk" (propofol), and had his spinal tap (with methotrexate) and bone marrow aspiration.

Here is an update of what we know (and don't know) so far.

1) Days in Hospital: 15 days

2) Mass in lung: No word yet

3) C-Diff: End of 10 day treatment today, however, we will be in isolation for two more days "just to be sure"

4) Pain: Still needs Morphine and Oxycodon combination. Off Tylenol.

5) Fever: No fever for two days!

6) Chest Tube: Still on suction. Won't go to seal until tomorrow at the earliest.

7) Bone Marrow Biopsy: Just completed the aspiration. We won't know anything for a few days

8) Bone Marrow Transplant: No update on matches lately. Our coordinator is working on the 10 best of the best for marrow, and 2 best of the best for cord blood.

9) Chemotherapy: Just received methotrexate today in his spinal fluid. Once we know what the results of the bone marrow aspiration, we will know what the next step is with chemo.

10) Homework: Trying to get it done, real lack of motivation on his part... understandably

11) Mood: Depends on the hour, overall theme is get me the hell out of here.

12) Food: Not eating a lot.

13) Eric: Working at the office twice a week, working from the hospital three days a week. Sleeping in the hospital room every other night

14) Sara: Trying to keep Alex from climbing the walls. Sleeping at the hospital every other night.

15) Tessa: Has either Mommy or Daddy at home every night. Spending her days either at school, or with Grandma Diana, or Gamma Carol.

16) Entertainment: Disney Channel is beyond annoying (except Phineas and Ferb). There are some really weird cartoons on Cartoon Network.

17) Chemo Pal: Alex really likes his new Chemo Pal...we do too! Thanks for being there for Alex, Reid!

Setback

Eric sent me this message last night, I thought I would just copy and paste it here:

******

The surgeon just came in. He said that the lung had started to collapse a little with the suction off. Not bad, but enough that they wanted to put him back on. He showed me the x-rays which is nice. I could see the line of the lung and how it was collapsed in a bout a half an inch. He showed me another one from yesterday morning when he was on suction and I could see the lung rounded out.

He said that they would get another x-ray tomorrow morning to make sure it went back to normal. He expects that with restarting late in the evening that it will not be ready to go off suction tomorrow (June 1st). So most likely they will try taking him off suction again on Thursday.

And at 11:45 he is still wide awake. He's tired an does not want to do any art or games, but is still awake!

******

We are waiting to go in the procedure room. It was scheduled for 9am, but we are talking "hospital time", so it will most likely be 10am. Thankfully, Alex is asleep, so going without food since last night isn't as big an issue right now.

What IS a big deal, is that he can't have his Oxycodon (since it is liquid, and the doctors ordered Nothing By Mouth). He is sore, in pain, and the Morphine isn't cutting it...