Time To Cut The Hair

I can't write anything right now, my heart hurts too much...

Last Day Of School

Today was very emotional for me. Alex had his last day of school. His friends all said "see you in 1st grade, Alex!". My sweet boy was tired, and didn't leave my side for long periods of time. He is getting really tired from the chemo.

I just finished updating Alex's battle calendar to include all his medications and appointments for the next 57 days. After that, it is Bone Marrow Transplant (BMT) time...

I haven't told him yet that he could miss the whole school year. My heart doesn't want to believe that he could miss the whole year, but my head is screaming at me to prepare both him and myself for the inevitable disappointment that the new school year will bring.

Overwhelmed

Yesterday was one of the longest days I have had in a while. I woke up early, and left the house before the rest of my family opened their eyes. I drove to a downtown hotel to speak to corporate leaders for the Leukemia & Lymphoma Society's Light the Night campaign.

Speaking to all of these people about Alex, and what our family has gone through was emotionally draining. As I looked at the tears welling up in these strangers eyes, I knew it was worth it. Alex's story was hitting home with them. My hope, is that they were inspired enough to help raise funds for LLS.

After that meeting, my head really wasn't where it needed to be, and I spent 20 minutes trying to find my car in the numerous parking garages surrounding the hotel.

Finally, with panic starting to set in, I rounded a concrete wall and found my car - right where I left it two hours earlier. The one thing I couldn't find, though was the ticket to get back out of the garage. Sixteen dollars later, I was on my way up the hill to Doerenbecher to join Eric and Alex for the all day chemo session. Eric had driven Alex up the hill to start their day at 8:30am.

With the aid of my GPS, I found my way from the hotel to the hospital without incident. Since Alex was not able to eat after ten o'clock - I ran by the cafeteria to hold myself over for the day. Once the elevator deposited me on the 10th floor, I found Alex and Eric playing "Nerf darts". The rules? No hitting nurses. Only doctors.

Dr. Stork came in, and talked to us about the road map for the next 57 days, and went over his medications. Then, she had a rousing dart fight with Alex before she continued with her busy day.

Soon, the Bone Marrow Transplant (BMT) doctor and coordinator came in to talk to us about the timeline. It looks like Alex will be admitted around August 15th, with the transplant 8 days later. This is just an estimate, since they have to work with the donor's schedule too.

We found out that the two perfect matches are both female, which means, Alex will end up with not only their blood type, but with XX chromosome blood too - just fascinating!

Our discussion with the BMT team went on for over an hour. We learned a whole lot - however, this is what was running through my head all night long.

Infertility

Bone issues (not growing all at the same time)

Multiple organ failure

Host vs. graft disease

Graft failure

Full body radiation

Mouth sores

Feeding tube

Nausea

Liver failure

Kidney failure

Cognitive issues

Unable to go to school (possible entire year)

Removal of his Port

Placement of a Hickman catheter

Viral Infections

Bacterial Infections

Fevers

Exhaustion

Rashes

Death

I'll go into detail about some of these topics in another post. I'm just overwhelmed - in order to save our son, from a secondary cancer, caused by the cure from the first cancer, we essentially risk his life to save it...

After the Cyclophosphomade, Alex had to be hydrated for four hours. In the meantime, we walked over to the procedure room to get his LP (lumbar puncture), to put Methotrexate in his spinal fluid and brain. He kept chanting "it's not going to hurt?, it's not going to hurt...until he was unconscious.

I don't even remember walking to the pharmacy to pick up the latest poisons to administer at home, but I ended up there, and listened while the pharmacist explained how to inject Alex with the Cyterabine. She confirmed the shortage of this life-saving drug, and my heart was heavy knowing that we were lucky to get it at all.

Wandering back up to the 10th floor, poison in hand, I walked back into Alex's procedure room, and was shocked that he was already awake - groggy, silly, goofy, but awake.

After devouring some saltine crackers, we had to hurry up and wait for Alex to get more Zofran (to help with nausea), and then get his final Chemo of the day - Cyterabine. We finally walked out of the clinic about 5:30pm.

A quick trip to the cafeteria, and a chocolate ice cream cone later, Alex fell asleep on the drive home. I pulled into our garage at 6:20pm. Eric carried a sleeping Alex to the couch upstairs, and I was greeted with a huge smile and loud "Mommy!!!!" from Tessa.

My day wasn't over, and I knew Tessa wasn't going to let me out of her sight again, so leaving Alex in the loving hands of his Gamma Carol, and Eric, I took Tessa with me to a very important preschool board meeting. She was a champ, and colored and played quietly, while we finished up our discussions.

Once home, Tessa went to bed, and Alex, Eric and I watched an episode of Dr. Who before we all dragged ourselves to bed.

What a day...what a day...

I Just Want To Play With My Friends

Tonight, a couple of Alex's neighbor friends came over to play. We had to turn them away, since we were just informed that they had contracted "fifth disease". They protested that they weren't contagious anymore, which is most likely the case. They are great kids, and I know Alex loves to play with them.

The problem is that with Alex's weakened immune system, we have to be extra careful. I am not a doctor, and cannot claim to know everything about communicable diseases, and I just can't take the risk.

Alex was devastated. He cried, he yelled "I just don't care", and then through his sobs, he said "It's not fair! I just want to play with my friends". All I could do was hold him, tell him how I agreed that it wasn't fair, but that we needed to be careful.

I am so mad at cancer coming back into our lives. Alex just wants to run and play, and enjoy being a 6 year old during summer break. Unfortunately, as parents, we need to shield him from things he can't see, and situations that his friends can handle without difficulty.

Damn you, cancer...damn you.

Matches

We got a call from the bone marrow transplant coordinator late Friday. She wanted to let us know that she has found two PERFECT matches for Alex, and has 3 more potentials.

This is huge.

This IS Huge.

THIS IS HUGE!

Some people only have a partial match, and some have no good matches at all.

Now, we will talk with the doctors about when to do the actual transplant. Everything is so fluid right now. Alex has been waiting for camping season all year, and now we have to put all plans on hold until we know how this is all going to play out.

So, we wait again. We wait to talk with the doctors, and we wait to discover how our summer will unfold.

I don't know how much more my heart and head can take of this.

What A Big Day

Today, my daughter graduated from her 2's class in preschool. It was such a sweet program, and I am so glad she will return there next year. I am a proud mama!

Also today, I took Alex back to school. It had been almost 6 weeks since he had been there, and the look on his classmates faces when they saw him was priceless! The kids followed him around the classroom all day...it did my heart good to see how many lives Alex has touched.

The most amazing part of the day, was watching this video put together by his class. I have said it before, and I will say it again, we live in an fantastic community, and we are so grateful for the love shown to all of us.

Whether or not I have said it individually to all of you, THANK YOU for your kindness, and your support of our family.

Alex has been playing in the afternoon with the neighborhood kids. It is bittersweet to see him playing, knowing how sick he really is. We are going to get through this, so Alex can grow up here and have fond memories of playing in our court on these long summer nights.

Home

We are home!!

You Lied...

Alex has been very vocal about his concern about pulling the chest tube out. I was told that the surgeons would give him Atavan, morphine, and oxycodon before they attempted the procedure. I was very clear when I asked the surgeons if it would hurt. I was reasured that if it hurt at all, it would be for just a second, and that with the pain medication, and the anti-anxiety meds would keep Alex very comfortable.

So, when Alex asked me more than twenty times, if it would hurt, I told him that the doctors told me that he wouldn't hurt for long, if at all. We have always been honest with him, and I felt I was giving him a reasonable explination of what would happen.

I made the surgeons wait while I took off Alex's dressing. Then, I crawled in the bed with him, to help hold him on his side, and reasure him, that it would all be over quickly.

Then the surgeon pulled on the stitches, told Alex to hold his breath, and yanked out the chest tube. Alex tightened in my arms, and them let out a sob. It really hurt. He looked at me and said "you lied!"

My heart sank, and I held my boy, while he cried. Tessa was visiting at the time, and she came over to give him a hug. She knows something was hurting her brother, and she just stood there, quietly huging onto my leg (the closest she could get to him at the time). It was a sweet moment, tempered by Alex's tears. After a while, he felt a bit better, and wanted to go to the cafeteria now that he was free from his tether.

Chest Tube Is Out

It hurt like hell...it was quite an emotional day, and my batteries as running on empty. I will post a more complete entry tomorrow.

No More Fungus Among Us

Two Ophthalmologist came by to check on Alex's eyes to see if there was any fungal growth hiding in his retinas.

Alex decided that drops in his eyes was where he was going to draw the line in the sand. He did NOT want to do it. No manner of pleading, asking, requesting, bribing, or reasoning with him would work. Eric and I had to hold him down while one of the doctors held open his eyes to put the dilating drops in.

After they left, Alex calmed down, and didn't want me to leave his side for a bit. This lack of control over what he can and cannot do to his own body just is so hard for him. None of this is OK - it all sucks...

The good news is that his eyesight was great! 20/20 vision, and no issues with his corneas or retinas!

So, unless the doctors decide to scan Alex's brain to check for fungus, we seem to be fungus free - although we will have anti-fungal medication for another few weeks.

Update

Alex seems to have become nocturnal...he didnt let Eric get to sleep until 2am. When I got here to the hospital, Alex was sleeping. He woke up about a half an hour ago.

He spiked another fever about 10:30 last night, and after a dose of Tylenol, it seems to have stayed away.

The doctors are concerned about his lack of appetite, and will be giving him an appetite stimulant to see if we can get him to eat.

The doctors have also ordered a retina test to make sure there isn't any fungus hiding out in his eyes. With the amount of anti-biotics and anti-fungal medication, the poor guy has been having diareah. I was worried that they were going to stick us in issolation again, but his C-Diff screen came back negative, so at least that is resolved.

Alex's chest tube will be water sealed tonight, and hopefully removed tomorrow...again, I will believe it when I see it.

Alex's counts are only 55 this morning for his ANC, and plateletts are dropping. The good news is that there are more monocytes, which are precursor white cells. So, when do we get to come home? Hopefully soon, but at this point, who knows?

102.4 Fever

...and another fever...102.4

I'm getting nauseous on this roller coaster today...

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...