Monday counts

The attending doctor let us go home on Friday with the understanding that we are usually very vigilant and proactive and would bring Lucas back to ER if anything goes wrong. After all, his counts was stagnant at 14 when we were released.

We had a busy weekend. I gave haircuts to Alex, grandma and grandpa on Saturday. Alex's finger nails and toe nails were both overgrown after two weeks of neglect. And I took Alex to two birthday parties on Saturday. It was so refreshing to see him playing with his old buddies as well as making new friends. I asked him what he wanted to write on the birthday cards and he told me he wanted to write "I love you". I thought about it and let him do it. He is such an affectionate and expressively little guy and I should not try to discourage it. Sunday morning Alex and I went to church, then playground with our church buddies. So Alex got to play with three sets of his friends during the weekend. Hopefully that would make up some of the fun he has missed while we stayed in the hospital for the past two weeks.

The few days after long hospital stays are always busy. Lots of laundary and cleaning and organizing. Forms for the schools are due soon. I did finish shopping for school supplies and uniforms for Alex the weekend before. Lucas got better each day since we went home. The laxatives finally got out of his systems and he is going as before, for the most part. Potty-training needs to be refreshed for sure. He felt warm once Friday night and measured 99.8. By Sunday he was eating and drinking the same amount as he used to.

We went in for finger-prick this morning and waited in the clinic for results -- since he might need tranfusion or if his ANC dropped to 0 again, they would admit us again. Luckily his hgb was 9.5 and platelets 161. His WBC 1.6 with ANC 176. So we went home and no chemo until ANC recovers to 750 -- then we will start long term maintenance (LTM)!

We will go home today!

WBC =0.7, ANC=14.   

ANC = 8

Stay put in hospital.  The composition of WBC is looking better though WBC also dropped to 0.8.  Platelets is 92, a good improvement from 62.  

An MTV and a George Bush leukemia article

Leukemia has most incidence rate in caucasians, lower for asian, and rather rare for African descents (whom we see on this floor, mostly with sickle cell anemia).  Here is a musician whose son is battling leukemia and a song he wrote and sang for him.

And did you know that George Bush lost a daughter to leukemia in 1953?  I didn't until yesterday when somebody on the ALL list posted the link.  What Barbara Bush talked about in the interview is very dear to my heart and I cried again and again for their loss.  "You have to realize that every well person is a miracle. It takes billions of cells to make up a person. And all it takes is one cell to be bad to destroy a whole person."  Please hug the miracles in your lives and be grateful for what you have.

The part about George Junior is really funny: "I must say, George Junior saved my life. I spent a lot of time playing with him and with Jebby after Robin's death, but I didn't really realized that George Junior was humoring me until I heard him tell a playmate that he couldn't come out today because he had to play with his mother, who was lonely. "

And her sentiments towards her other children is so real: "But each time the other children got sick, you can believe me, I was hanging over that crib more than any other mother. I was sure we would lose another child. You just don't know how valuable a child is until you lose one, and you don't know what a miracle it is when a child is born well."

Will we go home today?

Waiting anxiously for the ANC to come back.  The counts yesterday was: WBC 1.3, ANC 13, hemoglobin 9.8, platelets 62.  Today we are only told the WBC dropped again to 0.8.  If ANC is higher than 13 today, we can go home; otherwise, we continue to stay.

We have also been worrying about his urination and bowel movements.  He is holding both longer and seems to be in pain.  He still has daily bowel movements, but sometimes with lots of mucus.  Doctors think it's a side effect from chemo (mainly Vincristine) and we have been using stool softener since Sunday and started laxatives yesterday.  Hopefully that will help clear out his belly cramping and he will be able to go regularly instead of holding them.

Last chemo for DI

Today Lucas will have his last chemo for DI, and for high risk protocol, that means it's the last chemo for the front line treatment.  It's a Vincristine which doesn't usually tank counts.

He started another low grade fever yesterday afternoon, and went up to 101.4 at 4am.  Blood culture was drawn again.  They never stopped IV cefepime 3/day since last fever on Friday.  

His hemoglobin is 6.9 at 4am, they just drew additional blood to be used to for transfusion matching.

We learned from other ALL parents that before ANC kicks in, platelets will stabilize and start trending up.  Then comes abundant monocytes.  Then comes red blood cells and neutrophils.  After last platelets transfusion on 7/19, his counts has been 38, 32, 44, and today 55.  And his WBC had been 0.3, then 0.6 for two days, and today 1.0.  Still waiting for diff type.  Hopefully there will be signs of recovery (more monocytes) or if we are lucky, some neutrophils today.  I need to go back home to get some uninterrupted night time sleep to maintain my own health.

Update: ANC still 0. 90 lymph, 10 monocytes.

Another day of ANC 0.

At least we passed the 24 hour fever quarantine and we can go out of the room.  His energy level isn't as good as two-three days ago and doesn't want to walk on his own.  Appetite still low, and doesn't want to drink water.  The doctor wanted him to continue with cefepime for protection until his ANC recovers.

Today is day 8 of this hospitalization.  Looks like we will surpass our record of longest hospital stay of 10 days at diagnosis.  For the blood infection in March and seizure in April, he stayed 8 days each.  Our pediatrician has over 25 years of experience and has seen 8 leukemia cases.  He said our additional hospitalization is the most he has seen.  But if that's what it takes to get Lucas cured, that is what we will do.

Got up 5:45 this morning -- unexpected flash light from the camera!

ANC 0 day 5, diarrhea, no appetite

The good news is his last fever was 8pm yesterday and 24 hour blood culture negative.

Fever 101.2 and ANC 0

Started 4am, went down on its own then 101 again 11am.  Drew blood culture 4am.  

No mono today and zero ANC.  Plates was 5 so getting platelets transfusion now.   

No appetite but otherwise in good spirits.  Too bad he has to stay in the room because of the fever.  

Let's hope that the culture will be negative and fevers gone.

So warm, can't sleep

Lucas spiked a 100.8 at 12:30am.  He felt warm and was hovering around 100 all day.  Nurse assured me that his other vital signs all look good and she would recheck at 4am.  I woke up 2:30 and again felt he was super warm to my touch all over his body.  I was so scared and shivering when I took his temp.  And it turns out to be 99.8.  I walked out to talk to nurse and she said a lot of the kids on this floor do that -- feels warm but no temp.  I don't think I will be able to fall asleep until he doesn't feel so warm again.

ANC still 0, and all kinds of WBCs

Lucas still has 0 ANC today.  His WBC has been 0.3-0.5, the diff type last three days are:

Tue: 80 Lymph, 20 EOS

Wed: 96 Lymph, 4 EOS

Thur: 87 Lymph, 10 EOS, 3 MONO

I looked back all his CBCs since diagnosis (they are stored in a google doc spreadsheet and the link is at the right hand side of the blog site).  He never had EOS so high before.  I need to ask doctor what that means tomorrow.  Doctor told me today that the appearance of MONO often times means appearance of Neutrophils later.  I looked back to his blood infection in March.  His MONO was in single digits for 5 days, then jumped to 34.  A day later, ANC gets a non-zero number.  During another ANC hospitalization in later part of induction, MONO was 2 and next day neutrophils was 2.  So we still feel hopeful that maybe tomorrow he would have a positive ANC, and if not, the day after next.  We don't mind staying in hospital as long as he doesn't have a fever and eats and drinks okay.

He has been scaring us with his temp hovering around 100 since 3:30am today.  I woke up feeling he was warm and measured his temp -- 100.4.  Got nervous and measured again in 15 minutes and 99.8.  Ever since he has been doing this and we were super nervous whenever he also showed signs of irritation and/or tiredness.   He has very little appetite today and his weight has dropped from 14.4kg five days ago to 13.8kg today.  And I know he looks taller but the reality is that he has grown from 89cm at diagnosis to 90.5cm now.  But surely I worry about his ANC much more than anything else right now.  We are so close to the end of frontline treatment and we really don't need another hurdle.  

We get him fluids at a rate of 46 for 12 hours during night.  We tried to get him to wear pull-ups last night but he insisted that he is no longer a baby and doesn't need diapers.  He did well, woke up 6:30 and went in the potty for roughly 300ml (again shows how flexible his bladder is).   Jianwei took him to the playroom first thing in the morning before any other kid is awake so he can have a clean room by himself.  Later another kid came and they left immediately.  He told me that "the baby with diapers came in and she was full of yucky germs so we had to leave".  And that "baby" just walked by our room and pointed at Lucas -- "Look, baby!".  It's how funny how the 2-3 year olds refer to their peers as babies.  :)

Granulocytes (polynuclear leukocytes)
POLY	POLY, POLYS, PMN, or GRA
POLY, POLYS, and PMN stand for polymorphonucleocytes or polymorphonuclear neutrophils. On some lab reports, they refers to your segmented neutrophils and other times to your total neutrophils (both segmented neutrophils and bands). The Marrowforums ANC Calculator determines which case it is based on which other counts appear on your lab report.
NEUT	Neutrophils or Total neutrophils
Neutrophils are the most plentiful white cells. They move to the sites of injury and infection and break down bacteria by releasing enzymes. There are of two types of neutrophils: segmented neutrophils and bands. Neutrophils may also be called neutrophilic granulocytes.
SEGS	Segmented neutrophils
Segmented neutrophils are fully mature neutrophils.
BANDS	Band neutrophils
Bands are neutrophils that are almost mature. When mature, they become segmented neutrophils. Bands are also called band neutrophils or stabs.
EOS	Eosinophils or MID
Eosinophils proliferate when allergic reactions occur or parasites are present.
BASO	Basophils
Basophils are the least abundant granulocytes. They proliferate when allergic reactions occur and help destroy invading bacteria and viruses.
Non-granulocytes (mononuclear leukocytes)
LYMPH	Lymphocytes
Lymphocytes produce antibodies that fight viruses and bacteria.
MONO	Monocytes
Monocytes ingest foreign particles and dead or worn-out cells.

2nd day with ANC=0

The doctor wouldn't let us go home until that number shows an upward trend.  Considering the chemo he got recently, it will be a few days.  We worry about hospital super bugs a lot.  He is clinically fine -- another proof that ANC zero is asymptomatic.  He is just super bored here as we don't feel comfortable letting him go to the playroom.

Fever again with super low counts

We started the second half of Delayed Intensification on 7/2 with very strong numbers.  We did CBC on 7/1 and Lucas got CPM, AraC, IT MTX, and started Thioguanine on 7/2.  We stayed overnight on 7/2 for the clearance of CPM, just as we did with this chemo twice in Consolidation.  We came to clinic on 7/8 again for physical and CBC and got another IT MTX 7/9.  I have been doing his IV AraC at home for two weeks.  We usually don't turn on the AC unless it's over 85 but we kept the AC at 74 during the days when Lucas was accessed since we realize that his sweating would be problematic for the dressing.  I felt quite stressed for the past two weeks, doing the AraC, and worried that his dressing would come loose.  Luckily it only happened once when his dressing failed us and we had to go back to day hospital to get him reaccessed.  

7/13 Saturday -- the first day after all AraC is done and I felt like celebrating that there would be no more need to keep him accessed at home and administer IV medication for him -- he developed a fever at 10pm.  It was 100.6, then 100.8, then 100.6 -- we didn't rush to the hospital at once since he looked fine and we just thought it might get lower than 100.5.  By the time we got to the ER, it was almost midnight and by the time we got in a room on 12th floor, it was 4am.  Since last time we went to ER at the middle of night and Lucas got woken up on the way from ER to ward, he was very angry and loud and probably woke a lot of people up, I kept him awake until he got to the floor.  Jianwei thought I was cruel but I really didn't want to wake people up again.

His last fever of 101 was 1pm on 7/14 and he shows no sign of sickness other than tired and loss of appetite from chemo.  His ANC was 75, hemoglobin 8.2, platelets 25 at admission.  He was dehydrated that day and after some fluids, his ANC was 36, hemoglobin 7.1, platelets 9 on 7/15.  His heart rate has been above 120 and sometimes 150 so the doctors decided to transfuse him with platelets and blood in the morning of 7/15.   His energy level got a lot better after the blood transfusion.

Today he is due for Vincristine and Peg-ASP.  I didn't argue with doctor about this since I know the protocol says it very clearly that chemo will go on regardless of minor fevers and low counts.  The doctor would like to keep him hospitalized until he shows signs of improving/stabilizing of ANC.   At least he gets to go outside of his room this time.  We don't feel comfortable for him to go to the playroom if there were many other kids there, with is super low ANC.   However, he enjoys his walk in the hallway just as much.

I came home last night to spend some time with Alex and now I'm going back to the hospital so Jianwei can go to work in the morning.  Hope his ANC will rise soon!