Doing well

Mikayla is doing well. She is playing today. Her family has been rotating in the hospital, because of sickness. All and all, all is ok.

Not much to do

Today was a day of waiting. Mikayla was patiently waiting until 6pm to go to the play room, because it marked her 24th hour of no fever. At 6 she went to the door and hung out making smart comments like "when is the nurse checking my fever it's 6 already". About 605 she was cleared to go play. She played for about and hour and became tired and wanted to go back to her room and rest. We had some visitors come from India to see her and visit around 1 or so. Really for the most part it was just a boring day. Good to have boring days every once in awhile.

Results of todays spinal tap

The results came in kinda late around 10 or so. Her spinal fluid showed that it was "technically negative" meaning no blasts were found. However, they seen a single white blood cell and three red blood cells all of which was most likely caused by doing the puncture twice because the first was somewhat of a mistake because Mikayla's arm were out of position. So, this means that she has to test for two more clears before they stop injecting chemo in her spine and concentrate soley on her body if that makes sense.

Mailing address for Mikayla

I never really gave it much thought, but some people have asked about the address for sending Mikayla cards. The address is : Childrens Mercy Hospital

c/o Mikayla Bassett 4H6

2401 Gillham Rd

Kansas City, MO 64108

My only conflict here.

Yesterday some friends from Chicago area arrived to visit Mikayla. They brought a game thing called a Nintendo DSI and she hasn't put it down since opening except when she sleeps. She has become somewhat of a photographer. Today around 11 the dreaded team of rounds doctors arrived. Again they put us into a scare. They said her Leukemia was at 46% and on the rise. I showed them the CBC sheet and said that her WBC was only 1400 so why should we worry. A doctor said that we are gonna have to change approaches and chemos to be able to combat the Leukemia. Well as a parent the bad news again was taken pretty hard, but you try to keep smiling outside while trembling inside. I asked about seeing our doctor and they said he should be in around 1. Dr. Gamis (her doctor and the best man in world on AML) said other wise. He said she is doing great and that changes in her Leukemia isn't concern for alarm. He said her WBC was at a good level and declining. He explained that sometimes the bone marrow is still trying to rid itself of the original Leukemia it produced and that would more than likely explain the increase in percentage. He said that the Leukemia in the spine was kinda like Leukemia and kinda not. In other words the pathologist is not 100% sure it is leukemia. No changes are to be made to her chemo. We are staying on the same course as previously discussed and that Mikayla is doing pretty good, just the way Dr. Gamis would like to see her. Damn rounds doctors.

Leukemia in her central nervous system

This morning the doctors let us know that her leukemia has spread to her central nervous system. I have searched and searched online for an answer while we wait to see her doctor on Monday. This is all I could find:

Leukemia cells occasionally will circulate into the spinal column in the fluid called cerebrospinal fluid (CSF). For them to cause paralysis would be EXTREMELY RARE. See, leukemia cells are blood cells and don't form a 'lump' to compress the spinal column. Solid tumors such as breast, lung, or prostate cancer can spread to the spine and cause paralysis.
Typically, if the leukemia in the spinal column isn't treated the symptoms are usually visual (blurred vision, loss of vision,etc.) or nausea/vomiting.
Treatment of the spinal column usually involves having a special catheter put in place (Omaya reservoir) so chemotherapy (methotrexate or cytarbine) can be injected directly into the CSF.
This is usually done in addition to treating the leukemia throughout the body with systemic chemotherapy

It's not to go on and we have yet to know the full impact until we speak to the doctor. The rounds doctors asked if we had any questions, but luck with them is like playing craps at a casino. We do know that something like 2x a week she has a spinal tap and chemo is injected in and a screening of the fluid is performed. While doing this they basically look to make sure she is clear 4x in a row before they quit checking for it.

Leukemia still present

Today we recieved the results of the BMA (bone marrow aspirate). We were told that it showed that leukemia was still present. Because of her blood counts and the presence of leukemia she will begin her consoludation rounds of chemo by morning. As we understand it, it is really common for patients of AML to still show leukemia when tested after induction. Mikayla is showing signs of fatigue and as such has been given a blood transfusion that she is currently still taking. A few moments ago we noticed signs that her platelets are low and after the blood transfusion she will be given a plasma transfusion. She is very talkative and is eating good. She is a bit disappointed that she could not go home so we switched rooms and are getting new decorations. She is now in the biggest room in the Oncology wing, room 6. She likes the light in the room because all three colors work. Since we will begin the chemo straight away our stay will be pushed to around September 10 or so before we have another BMA to see our progress. This round of chemo will be a bit different than the first. She may have reactions this time that we did not see last time. Types of reactions typical of receiving chemo. As a family we were a little dis trot that it wasn't eliminated with the first round. Knowing and understanding the disease helps, but we still find ourselves wondering why and what's next. We, I think, try to keep a strong outlook and pray that somehow God will quit testing us and let us see the light at the end of the tunnel.