A few updates

First of all, the port the surgeons spent 1.5 hours on yesterday in OR is not working.  They suspect a blood clot in the device and has put a dose of TPA(?) to loosen it.  It doesn't seem to work though.  They will try a second dose of TPA.  If that doesn't work, they will give him a chest X-ray. Sometimes the tube has a little kink inside and could only work if the arm is raised, for example.  Let's hope Lucas doesn't need another port surgery.

The attending doctor talked to us about the first month of intensive treatment, which is called induction chemo.  Treating childhood leukemia is very much standardized in US. Same treatment will be given no matter where you live.   We will follow pre-B ALL high risk protocol.  If the result after the first month of treatment is not optimal, one would need to follow Pre-B ALL very high risk protocol.  

Today is Day 1. The chemo will start as soon as the port starts to work.  The induction chemo including drugs that will make his hair fall off.  14 days on steroid.  

Day 8 we we'll get another spinal tab.  The initial result as how effective the drugs are to Lucas will be known.  We will leave the hospital when his WBC is at a safer range, which is expected to be around day 8.

Day 29 will be another big day for us.  Another bone marrow biopsy and spinal tab needs to be done. The result of that will decide whether is high risk or very high risk. That's the weekend of 1/12.

List of drugs for induction:

Cytarabine

Vincristine

Daunorubicin

Dexamethasone

Pegaspargase

Methotrexate

There are also a drug to protect stomach from side effects of Dexamethasone, and a drug to counter effect the constipation effect of Vincristine.  There also an anti-nausea drug for another side effect.

Isn't that ironic? For someone like me who believes in alternative medicine and a complete minimalist when it comes to medicine, I will need to put so much drugs into my little boy.  One drug, some other drugs to help, even some others for side effects.

Back to where we started, hope the port will work soon!

Acceptance speech. :)

Even though I'm not an avid attendant to public religious activities, I am a true believer of higher beings, the divine.  Everything happens for a reason.  We might be too trivial to be able to understand the reason at the time of the incidence, and we might not even be able to comprehend within this lifetime, but there must be a reason.  If it's planned that I, together with my family, should experience something challenging and emotionally involving as this, I accept it.  I do not accept it as if I accept a challenge and ready to fight.  I accept it as if this experience will offer me an opportunity to live my life differently as I originally thought it would be.  I will embrace this opportunity and live my life positively, as I have always done before.

I'm so fortunate to have so many caring friends.  I read each and every emails, messages to my iPhone through different channels,  and comments left here.  Reading your kind and encouraging words is when I cannot control my tears.  I will not be able to spend as much time with you-my friends- in the near future.  Please keep us in mind and your encouraging words are always appreciated!

The operation last evening went smoothly.  Lucas went to OR 4:55. Bone marrow procedure and lumber puncture (spinal tap) done by Hematologist is finished around 5:30.  Installation of portacath done by general surgeon is finished around 6:50.  We were allowed to see Lucas in recovery room around 7:15.  Lucas's eye lids and skins around his eyes were a little bruised from the fact his platelets were low and he was blindfolded during the surgery.   The anesthesia did give Lucas side effects manifested as throwing up 5 times.  As he hadn't had food or water intake since Thursday dinner, he was throwing up stomach acid and that made him uncomfortable and fussy.  We didn't get back to our room until after 9pm.  Finally he settled down and went to sleep shortly after 10pm.

We had a very good night of sleep last night.   The nurse allowed me to sleep with Lucas in his bed as Lucas really wants me to.  Lucas is on IV for basic nutrition.  He hasn't complained about thirst or hunger.  I do worry that he will have poor appetite for a while and cooking for him will need patience and creativity.  Any advice or suggestion on that subject is highly appreciated!

Today the attending doctor will meet with both my husband and I to discuss the details of this type of leukemia Lucas has and the treatment plan for the first six month or so.  The spinal fluid result will be out by the the time we talk to her. Fingers crossed.  The treatment plan will be enhanced after the gene mapping results come back in 1 week.  The total treatment is at least 3.25 years (Lucas being a boy needs one extra year than girls to decrease cancer relapse in the productive organs).  The doctor joked that they would always be in our life from now on since Lucas would need annual check-up from Hematology and Oncology all his life.  Right.  Even after Lucas is considered "cured" from leukemia, he would live with a higher possibility to develop cancer (in many cases, hard to treat kinds) throughout his life.  It might be mind-boggling for most parents.  My super cute and 100% perfect Lucas is having an extraordinary life ahead of him.  I appreciate the opportunity to be his mother, to be able to see some extraordinary sceneries along the way.

preB ALL high risk

Initial lab work is in.  It's preB ALL from the bone marrow draw.   Since his initial WBC is 95,000, it's considered high risk and the drugs used tend to be a little more agressive.  But at least it's not AML or some other harder to treat ALL cases.

Lucas is in operation room now

He is expect to stay there for 2-3 hours. 3 procedures will be done (bone marrow draw and biopsy at hip bone, spinal fluid draw at lower back, and port installation. We are in the waiting room. After each procedure, the doctor will come to update us.

The test result for bone marrow will be out later today or early tomorrow.  From that we will know what kind of Leukemia it is and the risk category. Spinal fluid result will be out at latest Monday, that will tell us if the cancer cell is found in spinal fluid. First batch of chemo medicine is put into spinal fluid during this surgery regardless of the findings.

I really really really hope there will be good news that I can share with you tomorrow morning. The surgery goes as it's supposed to go.  And no cancer cells in spinal fluid. Please pray and bless! Thank you!

What life has prepared for me

Lucas is admitted to Children's for Leukemia.  Yes, I know it's hard to believe, but unfortunately it's true.  He had no alarming sign other than paleness and fatigue ever since the cold he got during Thanksgiving.  Dad thought I was a little over the board when I told him that I'm going to take him to the doctor.  I thought I was having him tested for anemia because of recent poor diet or a case of mono.  Had the doctor appointment at 4:45 and went to have blood drawn after dinner.  8:15 or so I got the dreadful call.  I had to let the Dad to hear from doctor himself as I know it's very hard for him to believe.  I didn't experience any denial or anger.  I do feel sad and I know I will feel sadder with all the ordeals Lucas is going to go through to get better.  His initial WBC is over 90,000 which put him into the high risk case.  We are yet to find out what kind of Leukemia it is.  We will find out more by Monday, if not earlier.  Friday he will be put under general anesthia to have three things done: bone marrow bioposy at the hip, lumbar something also know as spinal tap to draw spinal fluid, and a port put into his major blood vessel near the chest.

I know you still can't believe it.  Sorry I won't be able to talk to you.  Please leave comments here or send me emails.  We are standing tall.  I feel relatively calm and still smiling and joking as I always do.  There will be favors that I would need from you and I will ask when it's time.

Thanks for reading and please pray for us that Lucas will have a smooth treatment and fully recover.

I would entertain discussions and worries about how Kelly and I could both have kid with Leukemia, but this is not top priotity for me now.  Now I know I have a Leukemia kid and I need to be the strong loving mom and supporting wife.

I will try to get some sleep before the big day coming up for me.