Counts Update

Sorry to be silent for so long - we have been busy celebrating Tessa-Lynn's 2nd birthday. We are so happy that Alex was out of the hospital, and well enough to enjoy the celebrations!

So, on February 16th (my sister's birthday!), Alex and I headed up the hill for a counts check. The results were quite unexpected (at least for me!) His ANC was 8,900. Yes, you read that right. 8,900 - up from 100 in just one week.

Dr. Stork came in and told us "boy, his body really likes being off Chemo!" She could see I was worried that his counts were so volatile. She assured me that with him coming off of Chemo for a week, finishing his steroid cycle, and recovering from a virus probably count for a hug piece of the shift in counts.

She decided to put him back on 75% of Chemo - and not check again for 3 weeks - at his "normal" Chemo appointment.

At this point, we have given up trying to understand how his body is reacting to these poisons, and we have to trust the doctors.

We will hopefully find out the results of the genetic testing at the next appointment. I'm just glad we are back fighting this cancer...

A Lock of Hair

Today, Alex got his hair cut. OK...what's the big deal?

The big deal is that this is his first haircut since September of 2008. The first haircut since he lost all his hair to this dreaded disease...

I kept a lock of it - just like his very first haircut...to remind me of this new stage of life, and what that newly grown in hair means...hope for a long life, with many haircuts, without cancer.

Home At Last

We'll be laying low the next few days - but we are home, together. It sure is nice...

Cleared To Go Home

Eric called. The docs said Alex's ANC is starting to rise *slowly* BUT, enough that they are sending us home later today! I am so relieved!!!!!!

I'm heading back up to the hospital now, to relieve Eric so he can get to some phone meetings. Tessa will be hanging out with Grandma Diana & Grandpa Bob this afternoon until we all come home together!

Morning Update

No fever last night - so, we are over 12 hours into the required 48 before Alex can come home. We also need to see his ANC rising too...

Let's go Bone Marrow, Let's go!

Monday Update

Yesterday Alex fell asleep at 4:30 - and soaked his bed with sweat. Dinnertime came and went, he slept right through it. Finally, and 10pm, I closed my computer, and put my head on my hospital grade pillow, pulling the thin blanket over my exhausted body. Moments later, the CNA rushed in to take Alex's vitals, and change his sheets, waking him up *completely*. My heavy eyelids could barely register my boy who was now bouncing on the bed - asking for his dinner.

I dragged myself up, and got his dinner. Then, I set up a movie for him, and crawled back to bed. Happy he was fever-free, but too tired to jump up and down about it.

Every 10 minutes, he needed something - "I need to pee", "Mom, the movie stopped", "Mom, I want another movie". It finally registered in my sleepy brain, that he wanted me to play with him - he was bored, and wide awake.

We hung out on the hospital bed for a while - then, I started to feel the heat coming off of his body again. His cheeks were flush, and he complained that he was tired. I called in the nurse, and the temperature was 101.3 at 2am. The nurse got him some Tylenol, and both Alex and I drifted off into a dead sleep.

We woke up this morning about 8am. A doctor came in, telling me that Alex couldn't eat today before his spinal tap. I said "nooooooo - he only gets a spinal tap every three months, and he had it only 4 weeks ago". The doctor double checked, and we were cleared to order breakfast.

We got word that the flu swab came back negative, which means Eric and I can leave the room to go to the cafeteria, but Alex's counts are still only 72, so he cannot leave the room.

Our window is showing nothing but blue sky. Alex just wants to go outside and play - it is just breaking my heart!

So, essentially nothing has changed - except that Alex doesn't have a fever this morning (crossing fingers and toes), so the clock has started again on 48 hours. Also, his ANC will need to show a marked improvement before they will let us all leave.

I am falling asleep as I write this, so I will say good-bye for now, and go take a quick nap...if Alex lets me!

Fever Returns

101.3 at 2am...

Sleepy Boy

Alex has been asleep since about 4:30 - he is soaking wet, sweating like crazy. He has hardley eaten anything, all day...I hope this fever is really breaking this time.

Fever Back Again

101.0 - clock stops...

Morning Update

I'm back at the hospital - and Eric gave me an update of what was going while I was gone. So, here we go.

About one this morning, Alex's fever returned - 101.2. Another dose of Tylenol was given, and his fever hasn't returned since (crossing fingers and toes).

Around seven this morning, the nurse noticed that Alex's heart rate was a little low, and they hooked him up to an EKG to monitor his heart rate. The test came back normal. Then, a little later, someone came in asking about a respiratory treatment, which had the nurse and Eric confused. After further research, it was determined that there is another Alex with almost the same last name on the same floor on the other wing, and the treatment was for him. Needless to say, both boys now have big red flags on their accounts to double check the last name...

We got Alex's ANC results from last night, which were only 60 - yes only 60 - so no improvement there yet - ugh.

The doctors came in, and said the first swab came back negative (respiratory infection), and we are now waiting for the flu swab results, which won't come back until tomorrow. So, we are all still quarantined to the room for at least another day.

They are still planning on going forward with Alex's Vincristine Chemo and Steroids tomorrow. We are on hold again for the Methotrexate and Mercaptapurine. Alex's blood work to check for the gene that might be messing with his metabolism rates of the Mercaptapurine will be sent out tomorrow, and takes a few weeks to come back (unlike on TV, where genetic testing takes only hours). Our team of doctors will be meeting on Monday to discuss dose changes for Alex to make sure that we keep these life saving drugs running through his veins, without it causing dramatic drops in his counts.

So, what we know is that we are stuck here for the next 48 hours, his counts haven't improved yet, and we aren't sure what is causing the ANC to stay so low.

I also know it is a great day to go outside and play - please step outside and breath some nice fresh air for Alex - he can only gaze at the day through his hospital window...

Possible Good News...

Eric is staying with Alex tonight at the hospital, so I could come home and have some much needed "Tessa time" with my baby girl. My friend Taegen brought over dinner, so all I had to do was play with Tessa, and read lots of stories to her...so nice. I am so thankful for my friends, and my Mom - I don't know how we would do all this without them!

Eric called during dinner to say that Alex had fallen asleep, and was soaking wet - but not hot. We are both hoping that means that his fever has broken, and the clock can start ticking to getting out of the hospital. I don't know anything about his ANC figures today - they were scheduled to collect them in the evening. We'll probably know in the morning.

I have so much I want to do here at home tonight, but what I really need is some sleep. I think I'll follow my baby girl, and go to bed here shortly.

Fever Still Here

101.9 - the clock just stopped on going home. He has to be fever free for 48 hours + negative blood cultures - this room is getting smaller and smaller....

It took three of us to get Alex's nasal swab. I sat Alex in between my legs, and wrapped my legs around his, then held his head with both hands. Eric held Alex's hands, and the nurse took the swab.

He cried and cried - so did I.

Monday At The Earliest

We met with the doctors, and per the protocol, we are here until at least Monday - Alex's counts need to show improvement, and he has to be fever free for 48 hours, with negative blood cultures (for bacterial infection).

His doctor feels that this is just a cold virus taking advantage of Alex's system - however, the strict protocols are in place for any possible flu.

While we are frustrated by our imprisonment, we truly understand why the procedures are in place. We know how quickly these kids can have a benign cold turn lethal.

I need to be more vigilant with the hand-sanitizer - keeping a bottle in my purse again - and encouraging even more hand-washing. I just hate putting him in an isolation "bubble" when he "feels" great - and has good energy - I have to remember that the amazing energetic boy is fighting such a hard battle, and sometimes we need to protect him a bit more when his counts are low. It sounds so easy, right?

I'm not going to beat myself up over this. I am trying to give our son the most "normal" life while wrestling with his cancer, and the side effects of the poison being injected and ingested into his little body.

So we welcome ourselves back to the hotel Doerenbecher - check out isn't until Monday at the earliest.

Frustration

We just heard from the nurse that the flu test won't even be sent out until tomorrow, so they will need a new swab today. The first swab is being used to do a respritory infection test, so at least it wasn't wasted. The *swab* involves driving a wire up his nose, with a *tiny* piece of cotton on the end - it hurts.

It. will. not. be. pretty.

So, that means we are quarantined for all of today and at least all of tomorrow - I'm hoping to talk to the doctors about it when they do rounds this morning...maybe they will have a more definitive idea of what we are dealing with...

Fever Back

103.8 - I have nothing else to say right now.

Quarantined & Bad Dreams

The doctors took some chest X-rays last night. Alex has a cough, and it is getting a bit more pronounced as we have been going through the night. I believe the doctors said his X-rays were clear, but it was almost one in the morning when we finally got to our room, so I could be remembering wrong. I'll get clarification this morning, during rounds.

The nurse did a nose swab to check for flu. Alex was brave, but it hurt, and he cried. My heart, as broken as it already is, cracked a little deeper with those tears.

We started to battle about his bed adjustments (head/feet, up/down) -and then I realized that he was just trying to gain some little piece of control of his situation. I told him - "you adjust the bed any way you want, honey". It seems to be adjusted just as it was when he was first admitted back in November 2008...but this early in the morning, I could be hallucinating too.

The doctor last night told us that because they did the nose swab, *both* of us are quarantined to his room. If I leave his room, I have to leave the hospital - I can't even go to the cafeteria, or even the family kitchen here on the ward. Room 14 of 10 South is our new home for the next few days. When Eric comes today, he'll be quarantined in here too, until the lab results come back on the flu. I personally don't think it's the flu, but then again, I don't have an MD - so we'll see.

I'm now stuffy, and getting a cough too. The two of us are quite the pair this morning.

Alex is on fluids, and didn't go to sleep until almost 2am. That spelled bathroom accident at 3am...I'm glad I remembered extra underwear and pj's in my distraught packing last night.

Every time he moaned, or mumbled in his sleep, I was awake at his side. Since this happened a lot, I am quite sleepy this morning. Sleep deprivation plus a hospital room equals bad dreams for mommy. I'm sitting here, well aware that it was just a dream, but the ugliness of that dream is still oozing off my exhausted ego. I tried to write the dream down, and the details are fading faster than I can type - although the emotions are still strong.

Alex woke up at his normal time, and is now watching the first of what is promising to be WAY to much TV this weekend. At least it's the Penguins of Madagascar - I need a laugh myself...

Getting Admitted

Alex is getting admitted to the hospital tonight. His ANC was only 100. It will be at LEAST 48 hours before we can go home. All chemo is put on hold again too.

I'll say it again - cancer SUCKS!

103.5

We got to the hospital, and Alex's fever was up to 103.5 - and he seems even warmer now...

I'm still waiting for his counts - that will determine whether he gets admitted or not...

Alex is just about in tears when he asks if we have to stay - all I can tell him is "I'm not sure yet buddy..."

Updates as soon as I know...

101.1 fever

I'm calling the doctor now to see if we need to go in...

I have the sniffles too - so it's probably a cold - but with his ANC at only 800, we'll see if he gets admitted - I'll keep you updated...

Counts Up Again

Alex had his counts checked again today. His ANC is now up to 800. It is still low enough that they want to keep him at 50% dosage rates.

We will have his regular Chemo appointment next Monday, and will check counts again to see if they can increase the dosage.

Maintenance dosage is quite the dance!

Alex is feeling well, although, he is getting tired quicker since re-starting Chemo (which is to be expected).

Next week, steroids. Excellent...