Thankfully, Hannah got her PICC Line inserted last Monday and was also able to have her LP (spinal) with chemo (delayed due to blood infections) during the same general anesthesia. The PICC is working fine and the final pathology LP results are negative. Woo-Hoo! So, two down, her blood & central nervous system both clear, one to go, the most meaningful one, her marrow. Once there is enough bone marrow activity (ANC~500), the docs will schedule a bone marrow biopsy for the final piece of information for this cycle’s results.

Before they called us down to the OR, we had started the makings for a party in the room that included Momma going to the pretend store (across the room) for party supplies. Hannah made me a list: balloons, streamers, party hats & favors.  Once settled in our isolation room in pre-op, the party resumed, and guess who was assigned/signed-up for Hannah’s sleepy medicine? Yup, Mr. Handsome himself. Hannah made quite the impression, I guess. So the party was complete; we had so much fun making play-dough birds & eggs wearing our party hats. All the Oncology and OR staff probably think we’re crazy (because we are). But that just makes it even more fun, doesn’t it. The procedures took a few hours and all went as planned, thankfully.  Post-op was a different story.

So having the PICC line has helped tremendously, even though it’s still very sore hence very protective of that arm. At first she couldn’t suck her thumb since the dressing was too stiff and restrictive. But the 6N nurses & Momma fixed that post haste. Other than that, it draws and flushes well and it’s has two lumens (lines), so she has enough access points for any complications.

And unfortunately, Hannah’s complications continue, and the need for two lumens is required. Her gut and side pain persists so we had several x-rays and an ultrasound, all inconclusive. We also tried to do a CAT scan, which required a separate IV due to the high pressure contrast injection, but they couldn’t find a vein after two tries and a hour of looking (Hannah was really mad, and she had every right to be!  The docs scheduled a MRI instead, that will be tomorrow.

This weekend Hannah has continued to spike fevers and today too, hasn’t felt well enough to walk much during the week, plus she has no appetite and will not eat now. So our concerns grow. Nothing has cultured out in her blood, so it seems, at this point anyway, it’s not a recurrence of last week’s blood infection. So they started her on an anti-fungal antibiotic as a precaution (please, don’t let it be a fungal infection!), since it takes about a week for test results that may not be totally decisive. Hopefully they will see something on the MRI tomorrow ... but there may not be much to see since her white blood count has not recovered yet and it’s the white cells that flood injured or infected areas and cause the obvious irritated or inflamed sites which would identify what’s ailing her. So the two lumens and 2-3 infusion pumps are kept busy all day and night long with multiple antibiotics, pain meds, blood products and fluids.

So far, Hannah is going with the flow and has had some fun in between it all. The silly pumpkin man balloon got caught in a tree, she got a kick out of that. We also ordered online some Baby Einstein puppets last week and have been having lots of fun with them ... the dog puppet, Pavlov, talks with all the nurses and docs just like Elmo, but gets stranger looks until they see him on the DVD and then they want, or rather Pavlov suggests they want, his autograph (cheeky puppet). In between her many fever or pain med induced naps, our witty, loving, feisty, Hannah pops out, which is always fantastic to see and gives us hope that her well-being isn’t too compromised.

10/10/2008 Update:

Done with the chemo part of this cycle last Sunday and had many side effects:nausea & vomiting from chemo but hungry due to steroids (bad combo), so using Ativan (anti-anxiety that has anti-nausea affect too) to supplement the Zofran (anti-nausea); required platelets or red blood every other day; shots in her thigh with a very long needle that had to go deep in her muscle before pushed; eye drops every 3 hours, one day active, then tired the next (all expected); healing is really slow and lots of bruising; spiked a high fever; and über smelly chemo poopies. Not much fun, but was all managed and Hannah only really freaked with the dressing changes of her central line and the 2 shots in the thigh, but she got through them.
     
Hannah spiked another fever Tuesday night and this time it cultured out to be a very dangerous blood bacterial infection (Pseudomonas aeruginosa) and a second bacterium developed later into Staph non-anreus (not the really serious staph and common in hospitals). Both were most likely introduced into her body/blood via her skin around the central line site or via the central line itself (line didn’t get cleaned enough before being used). Pseudomonas is a free-living bacterium, commonly found in soil and water. It is referred to as an opportunistic pathogen (germ), since it has the ability to exploit some break in the host defenses to initiate an infection. It is so resilient and adaptable; it can even live & thrive in gas, oil and on aluminum (!) as well as in humans & plants. So we had to have her central lines pulled, because this bacteria will adhere itself to anything and coats itself with a mucus that can not be penetrated by many antibiotics, like her plastic central lines. Unfortunately there was no other choice, so she was placed Thursday morning on the Thursday’s surgical add-on list.
 

Those of you that have dealt with Children’s OR know what that means … yeah, we waited ALL day for them to squeeze us in, no food or fluids until 8pm.  And Hannah is still on steroids, feeling cruddy because of these infections and her stomach & sides hurt (x-ray showed a slowing of her bowl & colon irritation as well), so you can just image her hunger/frustration. We kept the room lighting soft, played Baby Einstein music (whimsical classical music), had lots & lots of projects, and the key, kept half doses of Ativan flowing…for all of us (just call us the Ativan family). Thankfully, Hannah was calm most of the day and was such a good gal throughout the entire day. After surgery was another story … enough said. She’s an amazing trooper.

Without a central line, the IVs and butterfly stick misery has commenced.  Hannah has an IV in each foot which really distresses her. This means no walking, but she feels pretty sick and we are isolated to the room on precautions anyway because of the gut issues. But at least she doesn’t have to look at the IVs all day (covered w/socks & a sheet), so out of sight, out of mind. The good news is her arms/hands are fully available for projects and her critical comforting sucking thumb is free. And thankfully our compassionate, organized nurses have been able to consolidate her blood draw needs (med pre/post levels, CBCs, cultures, etc.) to just one butterfly stick a night. Though they are not any fun for Hannah, we know the routine: how to set up the room & distractions, give her words of encouragement, plus “the 5 minute warning” and thankfully we’ve been working with the IV nurses who are accurate & quick. And help with more Ativan, of course. Blood cultures have been negative for the last two days so far, so we are hoping tonight’s butterfly stick is the last for this round. Hannah is on the schedule for a semi-permanent PICC line (Peripherally Inserted Cardiac Catheter) in her upper arm tomorrow (a morning surgical slot currently) and we will also be able to do her LP and intrathecal chemo too at the same time. Fingers crossed that cultures continue to stay dormant and the PICC line, LP & chemo procedures go well and quickly in the MORNING. Plus, hope that her stool cultures are negative of any bacterial issues when tested tomorrow, so she can go back to the playroom.

The most challenging difficulty this week for Hannah has been the required liquid diet. She loves her eclectic food choices. But her gut and side have been irritated by the chemo, infections or the combo (and maybe the long term steroid treatment) hence the restriction. She does not do well without food and is extremely crabby when hungry (just like her Mom). Plus food is a comfort as well as an event for her. Thankfully, yesterday she was able to have small portions of solids (rice, pasta, potato), but cried for more naturally, so she was still very cranky. Today though, she has seemed to turn a corner though (hopefully); her stomach & side are mostly just sore and she is able to eat more (and we haven’t really needed Ativan today) and she’s even had a few laughs today.

Infection Control discontinued one of the four antibiotics today feeling the infections are almost, if not, clear now and the other antibiotics will cover any lingering infection. This gives her kidneys and stomach a break, so I’m sure that’s helping her feel better too. Bad week for our baby, but we are hoping we have got the bad stuff out of the way so we can relax and have some fun while we wait for her marrow to recover.

So back to the primary reason we are here … Hannah’s counts have bottomed out as they should– she’s had twice as much chemo this cycle as she has ever had, and all high dose to boot. Now we hope, wish, meditate, implore, and pray for remission.  And we also call upon her host cells to recover and repopulate her bone marrow so that they will recognize any new cancer cells that may be made and reject them (unlike her original marrow was able to do). Her blood has tested O+ the last half dozen times (host blood type) and we only saw A+ (her original blood type) a few times since she relapsed. And her hybrid blood is being supplied by her marrow which is hybrid too when tested six weeks or so ago. So the sixty-four thousand dollar question is: what will grow back in her marrow? Positive thoughts for cancer free results and lots of O+ cells.

Day 1 started last Thursday with a new central line replacing her port as well as a Lumbar Puncture (LP or spinal) for tests and intrathecal chemo plus a bone marrow aspirate for Sloan Kettering’s, NY Cancer Center, testing. Hannah was so good for the late surgery slot (2:30pm slot that slipped to 3:30pm) until about 1pm and then the melt downs started. Remember she is still on steroids and was an eating machine, so missing many meals/snacks from 6am wasn’t easy, but she was a real trooper and luckily the anticipation of playing in Sarah’s playroom (Oncology ward playroom) was working like gold.
 
The procedures took about 2.5 hrs and Hannah was pretty crabby and VERY hungry when she woke. She scoffed down some taco and a Halloween decorated donut in quick order once given the okay from X-ray that her new line was in place properly. We were soon on our way to our room on the SCT ward, since they were full on the Oncology ward, but we moved there the next night, closer to Sarah’s playroom. She was very sore that night and the next day, so we just hung out in the room and relaxed, but was able to go out for a quick stroll in a car/taxi to the garden which broke up the day.

We were also put on pre-cautions due to new rules unbeknownst to us when we were admitted. A new regulation had been put in place since our last inpatient stay; if any patient had VRE (digestive tract bacterial infection) in the past, they could not go into any public areas due to an outbreak sometime last summer … meaning any playroom (not just SCT’s). Hannah had VRE while inpatient last winter …   After a few frustrating tears of discovering she could not go to Sarah’s playroom, Hannah’s favorite place in the whole wide world, where she literally grew up, I immediately paged the doctor about the situation. She apologized for not knowing that Hannah had VRE during SCT otherwise she would have prepared us but would sort out something directly. And the she did in less then a few hours. Hannah was allowed into the playroom when alone (which was scheduled) and took two VRE tests that came back negative, so now she can be in public areas again.

Day 2 through Day 5 were busy chemo days including High Dose AraC (Cytarabine) infused over 3 hours every 12 hours, Mylotarg (monoclonal antibody targeting cancer cells used mostly on adults and just recently with children) and an Asparaginase shot in her thigh muscle. Plus high dose hydration and eye drops every 3 hours, both around the clock. Translation: not much fun or sleep. Hannah’s had the HD AraC and Asparengese before and thankfully there were no surprises just the normal nausea and chemo cruds, but the Mylotarg is a new one for us and has many common side effects that are worrisome. Thankfully, she only had a one night reaction including high heart rate (190) and low O2 (88), spiking a high fever, and the body shakes. A bolus (rapid hydration) slowed her heart rate, blow-by oxygen helped with the O2 deficiency, Tylenol for the fever and Momma’s soothing, relaxing stories & deep breathing exercises stopped the shakes. By morning, all symptoms had ceased and she was no worse for the ware and was in the playroom by 10am. What a trooper.

But Day 5 brought great news; Hannah’s blood had no cancer cells!!! (from over 50% when we were admitted) The docs are pleased as well as we are. Now it’s time for the chemo to work on the bone marrow!

Yesterday and today we’ve had a break from chemo and have done some fun Halloween activities including crafts, making candy bags for all the kids on 6N and 6W, decorating the room with purple lights, purple shiny bat garland, window stickers, hanging bats and a huge spider web. Everyone is enjoying our decorations and she’s looking so forward to Friday’s big Halloween party here. She has several costume changes planned for the day … only Hannah.

Tomorrow, Day 8 we will continue the HD AraC and Asparginesse like before and be done with the chemo-in-the-blood-part of this cycle by Sunday. Hopefully the marrow will also become cancer free too as well as continued luck of no dangerous side effects. Next Thursday, Day 15, we will have another intrathecal procedure since last Thursday’s LP (Lumber Puncture or spinal) showed one abnormal cell in her spinal fluid, which was disappointing, but it’s good we found it now and can react from the get go instead of finding it later down the line when it would be harder to battle. I’m putting it under the category of things happen for a reason …

    
Then we wait … for LP results and bone marrow recovery which could take 4-8 weeks. There is the side effect possibility of Mylotarg that they will not recover on their own, but Hannah is strong and is living & eating well.