Andrew was diagnosed with Erythroid (M6) Acute Myeloid Leukemia on November 4th, 2010 when he was almost 5 months old. Andrew is currently in remission from his cancer, after finishing his 5 rounds of chemotherapy. He is a healthy, happy toddler.

Sunday, May 29, 2011

Busy busy busy

Well Andrew got his PICC line pulled yesterday. This is good, bad and exciting. The good part is that lines are always an infection risk, the bad is that he will need to get his blood drawn the normal way on tuesday, which is painful, and the excited is that our little Andrew is line free. Other than a lot of scars and bruises, he looks like a normal boy!!!

The first night home we expected to get no sleep. The second night home we were hoping for at least a little sleep. Didn't happen. Andrew was sweating really badly with no fever. We couldn't figure out why. After talking to an ICS NP we were told to just monitor him. Then he started gasping. The gasping continued even after we had gotten him to sleep (it took from about 8pm to 12:30 to get him to sleep). We figured it was due to pain, rather than not breathing well. Just to make sure the ICS fellow on call told us to go to the emergency room. So Andrew and I hung out in the ER until about 3:30 in the morning. They prescribed him oxycodone and we went home. Soon after we got home Andrew fell asleep and slept well until about 10am... without pain killers. Hopefully it was just a little thing that affected him for a few hours.

Saturday, May 28, 2011

Home sweet home

Our little Andrew is home!!! He had his last dose of vancomycin from noon to 2, then a bit of paperwork and voila we were done. The nursing staff sang "happy last chemo to you," Andrew rang the bell, and after some hugs and pictures we were on our way home!!!

Thursday, May 26, 2011

Home Sweet ICS

Andrew keeps getting better and better. His ANC was 3500 today with a white count of 5.3 (I think)!!!!! This is amazing news. His platelets are coming up, and his hematocrit is stable at 30. They starting weaning him off the oxygen about 2 days ago, bit by bit, going down a liter of oxygen/hr every 4-8 hours or so. He is back on room air for the most part (which is 21% oxygen), except when he sleeps. We are waiting for a room to open up in the ICS to finish out the last little bit of monitoring. Hopefully, early next week, we will head home for good!!!

Wednesday, May 25, 2011

ANC climbing

Andrew's white blood cell count is at 3.5 (normal 6-17) and his ANC is at 1700(normal 1500-8500)!!! He has stopped Tylenol and only has a fever of 100.5F. He still has fluid on his lungs and around his heart, so he is still in the PICU for the next day or so.

Tuesday, May 24, 2011


I was cautious to say that things were better yesterday because we've been let down just about every day, but things are definitely getting better. We're weaning him off the oxygen bit by bit, and although the process is very gradual and slow, at least we're getting somewhere. They expect we'll be out of here in 2-3 days and we'll be back in the ICS for monitoring.

He still is getting high fevers every so often. They seem to be less and less common, so maybe once or twice a day he'll spike. His ANC is now 400 and his white count is 1.5!! We are super excited.

We were sad to hear that our liver transplant friend, Ashley, didn't make it through her surgery. Ashley was a little angel who would write cute notes to Andrew. She was always wanting to make people happy and comfortable. Our prayers are with her family.

Monday, May 23, 2011


Today Andrew had a CT scan to check for invasive fungus in his lungs and/or sinuses as well as any abcesses that may be causing his symptoms. Before the scan seemed like a usual day in here, but after the scan, Andrew got quite a bit of energy and played with some toys for a while. The great news is that he has and ANC (absolute neutrophil count) of 200!!! The neupogen is definitely doing its job. The platelet bolus he got on Saturday bumped his platelets from 18,000 to 140,000, and they are still high. Hematocrit is still reasonable. The only thing that's still not great are his fevers and continued difficulty breathing. Both seem to be slowly (very slowly) improving.

Andrew had his NJ (naso-jejunum) tube placed. Actually, it should probably be called an ND tube (naso-duodenum) because that's actually where it ended up. They didn't want to do a nasogastric tube. He gets medicine and milk through it. This means that he doesn't have to have a lot of meds through i.v. like Tylenol, and ondansetron.

We were able to see the CT scans. The results were negative for anything bad. The neat thing was that we were able to see where Andrew's cancer was under his eye and compare it to the CT scan done back in October. The bone that was missing from the original tumor before now has filled in. His cheek bones and eye sockets aren't perfectly symmetrical but at least there is bone there!

Sunday, May 22, 2011


We're starting to get the hang of the PICU and why they've set up the rules as they have. At first we didn't understand the rule not allowing parents in the unit from 7-8pm, or the food rules, etc, but considering the kind of patients and situations they have, it makes total sense to us now. Andrew stats-wise isn't getting better, but then again, he's not getting worse. His white count is just about the same as yesterday (the bands turned into neutrophils). The bad news is they found some fungal proteins in his blood (not necessarily indicating an infection, but evidence that he's been dealing with one), which is concerning. So far, that makes one detectable bacterial infection (Strep), one viral (Rhinovirus again), and now some fungal protein. They let us move another CT scan they wanted to do until tomorrow as well as placement of his NJ tube (they can thread a tube down his nose past his stomach to give him food, and it's less risky than an NG tube because he has less time to throw it up). They're letting us rest today.

Andrew is sleeping a lot. He seems to be unhappy when he's awake (no duh, right?), but I'm hoping and praying that things will get much better tomorrow so the docs will intervene less and Andrew can just continue to heal.

I really like our infectious disease doc. He said that a definitive diagnosis would involve a lung... he didn't even have to finish. Either a bronchial lavage or a lung biopsy would be very invasive procedures. The first one is self explanatory, but the second involves going in surgically, spreading the ribs apart, deflating the lung, then cutting out a chunk of lung. Getting back to the reason I like our infectious disease doc--he said that he really didn't care what Andrew had, just that he got rid of it on his own. He's not crazy about grabbing lung tissue, he just really wanted problems to get solved on their own as Andrew's counts go up. That was really reassuring to me because every once in a while, I've got the feeling that they just are just curious to know what it is more than being concerned for Andrew's overall welfare. I know that's not true, it's just nice to hear it.

Saturday, May 21, 2011


Andrew's fever is back. Went all the way back to 104F. But at least he is getting white blood cells back. Sometimes when they get white blood cells back they will actually get worse for a while. Also, his respiratory rate has been high today, about 110/min.

central out, PICC in

Things just move faster here in the PICU. We are constantly having to make decisions and question the necessity of various tests. With no central line Andrew had to get poked multiple times about every 3 hours last night for labs (both venous and capillary). He is really starting to be weary of other people around him, which is sad because normally he is a very social kid. We just hope that soon forgets this experience and starts to be trusting again. This morning was as unorganized as can be. Our night nurse didn't realize that she needed to start platelets a half an hour before his central line came out because his platelets were at 18,000 and surgeons prefer 50,000. This mistake almost compromised the surgery, which was done at the bedside. Our day nurse picked up the slack, in time for the surgeons, who showed up a half an hour late and started administering sedation before they were ready to do the line removal. Long story short Lizzie became a primary assistant to the surgery performed on Andrew getting things for the surgery as well as getting people like the charge nurse to draw up extra doses of ketamine and versed. Eventually the fellow came (who was more or less supposed to be directing the surgery) and Andrew was so squirmy that they needed the attending to come help. As soon as the line was out, the i.v. team was supposed to be here to place the PICC line. They were late as well and so Andrew had to be kept under sedation for a while. The I.V. team was unsuccessful after 3 tries of placing the PICC and so one of our oncologists stopped it and demanded that the radiologist do it with his special equipment. So the radiologist on call came in and placed the PICC line. Andrew's sedation, which was only supposed to last for maximum an hour, lasted from 9:30am-12:00pm then 1:30-2:00pm. The interval between the sedations he slept, and has been sleeping for the 2 hours after the final sedation. It is good to see him at peace even though they say it sets him back from recovering from his breathing issues. It's a constant toss up here whether or not more interventions will make more interventions necessary.

Good news, between doses of Tylenol, his fever only went up to 100F this morning. We don't know if this is a fluke or if his fever is actually dropping. We have had false drops in his fever before. Other good news is that his white blood cell count increased to 0.4 (normal is 6-17), and he had monocytes and bands!!! Thank goodness for neupogen.

We had a special visit from Robert, Tanner's dad. He really brightened our day and helped us feel as though things were going to turn out well soon.

We feel hopeful that Andrew's condition will continue to improve. We aren't leaving the PICU very soon, but progress is being made. We really appreciate the thoughts and prayers.

Friday, May 20, 2011

poked and prodded

Well its been a long day. His fever is still dependent on Tylenol. When the Tylenol runs out, he spikes a high fever again and his respirations as well as heart beat spike. So, when he has enough Tylenol in his system the day is pretty relaxed, but when it wears out, the whole PICU crew starts to get concerned. This afternoon however, was not relaxing. The doctors have all been discussing what to do about Andrew. It has been a week since any blood cultures came out positive and so his fevers should be going down by now. They decided to to an echocardiogram, CT scan, and pull his central line. We did the echo and were in the process of the CT when his line broke. That cemented the deal that they are pulling his central line. They eventually decided to hold off on the CT for a little longer. Anyway, the surgeon was here to remove his central line but there was no one who is able to place a PICC line. So rather than sedate him twice, we had the central line glued shut over night and we are having them remove it tomorrow when they can place the PICC line. Which brings me to the final bit of news. Andrew's breathing is still a concern and so rather than him going under general anesthesia they will have to do all of these procedures using sedation and local anesthesia. We are not looking forward to Andrew being cut open while awake. It is a small quick surgery but sill not fun.

baby steps

Progress is slow and to inpatient parents seems almost non-existent. We are crossing our fingers that his fever might be breaking. This morning, an hour before his Tylenol was due, he had no fever. We aren't getting our hopes up yet because occasionally his fever will go down right before it spikes back up to 104F, but it is encouraging. Also, Andrew is learning how to sleep through a lot of noise and pokes down here in the PICU. We hope this trend continues upstairs when we make it back to the ICS.

Lizzie was able to go to Tanner's funeral today; our prayers are with his family.

We miss the ICS, its kind of like a family up there. All of the doctors, nurses, social worker, and techs know us and know Andrew. We have lived there so long that walking down to the parent room is as normal as walking out to the kitchen at home (still rather be home). Anyway, its much easier to handle trials when you are around that kind of support group. We really appreciate the ICS doctors and nurses who have come down to visit us, just to see how we were holding up.

Here are the fliers which are all over Utah:

Andrew is waking up so I have to go

Thursday, May 19, 2011

More Updates

Andrew is still stable. They have gradually decreased his oxygen percentage to 40% (room oxygen is 21%), but the pressure is still at 8 liters/minute. This makes Andrew very uncomfortable. We're two steps from intubation, but it seems like although Andrew is still respiring at 60+ breaths/minute, he's kept his blood gases stable. His chest x-ray from this morning shows that his lungs are still full of fluid, but there haven't been any dramatic changes in that department.

I won't sugar coat the fact that he's pretty miserable, and so tired of breathing so fast. He has barely kept anything down, and he's maxed out on anti-emetics. Dermatology came by this morning to biopsy his rash (did I mention he developed a rash? it's more like red spots). The main hypothesis is that it is a fungal infection on his skin (which can easily happen with neutropenic kids), or it may just be a drug reaction to his antibiotics. The dermatology people say it looks more like a fungal rash than a drug reaction. They told me they were really sorry, but they'd have to do two spots instead of one because they often need 2 samples, and they really didn't want to put him through that again. Okay, sounds good. She injected him with lidocaine, took a 3mm diameter cutter thingy and went all the way down to his fat. It was a sizeable chunk of skin for a little guy, and it's deep enough and bleeds enough that they needed to put in a stitch. This is the absolute most they do without actually putting him under. It's such a sad thing to see hold him down and inflict pain because he doesn't know that it's actually a good thing, and he's not old enough that I can tell him to be brave or anything. Since then, he's cried every time someone draws from his line, changes his caps, or listens to his heart or lungs, which he has never done before. He is truly traumatized. I was glad it was all over with so we could just get answers.

He's NPO right now (nothing orally except his oral meds) because of the risk of aspiration that comes with such a high-flow nasal cannula, so I have to pump exclusively (I'm planning on nursing until he's no longer immunocompromised). It's nice to have a little break here and there and just get a breather. This afternoon I took a quick break and when I came back, Andrew was screaming his head off and the dermatologist was stitching up yet another biopsy. What the??? One of the oncologists (not the infectious disease people, or even the dermatologist) had ordered yet another biopsy. She insisted that it was necessary and it had to be done right now. Come to find out, only one of the two other samples had been analyzed, the first sample being negative for fungus. Andrew has had high fevers and has really struggled to breathe all day, and a fungal rash is truly the last thing on my mind. I still don't see why this biopsy was necessary (the first two they put in formalin, this one was supposed to grow a culture), but right now, I care a whole heck of a lot more about his comfort than a stupid sample. Even if it did come back positive for a fungus, they most likely wouldn't change his meds. I haven't gotten this angry/upset/flustered for a long, long time.

It was ironic that this happened because I had just convinced the attending not an hour before to not do a peripheral blood culture (i.e. a venous poke) because, frankly, it doesn't make sense at this point in time (it would have made sense when he first had a fever). If he had the infection harboring in his line, a culture drawn from it will show it. If the peripheral culture and the line culture are both negative, it doesn't get us any more useful information. I'm fine with other pokes like cap gases, etc, but these two just did not make sense for trying to make him get better. As one of our friends who lost their little girl last January told me, the motto of the hospital really is the child first and always. The child's interests reign supreme. I am no longer worried about offending residents, nurses, and even seasoned doctors if it means that my child has to go through less pain. It took a while, but I have become much more assertive in asking why exactly are you doing it, and what's it going to show you? Can you wait? I need to calm him down, etc. Because these people don't know Andrew, it's even more important to ask these questions because I know his history the best.

Even with all the misery, I know that it's good that we're down here. Although I feel less comfortable with the nurses down here because they aren't as familiar with Andrew, I breathe easier knowing that he's monitored very extensively. However, I have noticed more alarm fatigue down here in the ICU than up in our ICS townhouse. I am happy they let me sleep in the same room, because even if they don't notice something, I will. After today, I am even more crazy about staying with him all the time.

The other thing that's been really upsetting to me today is that I can't go to Tanner's funeral. I really love funerals not just because of the closure aspect, but because I love the idea of gathering together and celebrating a person's life. I really wanted to be there for his parents, and learn more about the kind of person Tanner was. I can only surmise what kind of a person he was from knowing his parents, and I am sad I can't honor his memory by being there.

Thanks again for the faith and prayers. I really need them. Even with the extreme sleep deprivation and stressful times, I know I am being supported because normally I would have stopped being able to function by now. There's not much that many of you can do for us right now but what you have already been doing. Thank you.

More and more tests

There's so much to update, but the quick update is that Andrew is on a high-flow nasal cannula that has significantly helped his respirations decrease from around 100 to 70-80 per minute. Apparently 30-40% of AML patients get a Strep infection, and infectious disease tells us that he hasn't heard about any other organism in that first blood culture, so it may just be a single organism after all. It's possible that Viridian strep is causing pneumonia and the persistent fevers, but it's less likely they are causing the red spots on his arms and legs. Because of this, we're seeing the dermatology people and he got a pretty traumatic biopsy this morning. I think he finally may be developing a fear of doctors now.

Things are still touch and go, but we know we're in the right place. He's still breathing with a lot of effort, holding his breath, then catching up, but things go so much better when he's sleeping.

By the way, Andrew's famous! I'm almost positive he was the first patient in the PICU to receive intravenous tylenol (the drug I was complaining we didn't have in Round 3). It's been really nice because as of today, he won't keep anything down at all, and we really need to control his fevers.

They're challenging him with the oxygen coverage so he has to work for his air. Over-oxygenating for a few days will actually cause scar tissue in the alveoli and sometimes can increase the free-radicals in his body. He was on 100% oxygen all night long, so... sigh.

This should all be under control when his counts come up, but so far, we've seen no signs of life. His white count is still at .1 (normal is 5-17), so we're hoping the neupogen does its job.

I just went out to round with everybody. Sounds like we'll be here for at least a few days. Thanks so much for thinking of us right now. We really appreciate the love and prayers.

Wednesday, May 18, 2011

Time to breathe a little easier

In the PICU the respiration specialists put Andrew on a special machine. It is nasal canula (no intubation needed) which humidifies the air a bit. This allows them to bump up the liters per minute oxygen he gets by about 4 fold. Basically it pushes a little bit of extra oxygen in the lungs so that he has to use less energy to inhale. His breathing is much less labored and and his respiration went from 11o to now around 70. This is a very good thing!!! Rather than just needing to be held all the time he actually sat up (with a little help) and played with the stuff around him for a few minutes. We aren't out of the danger zone yet, but we are breathing a little easier. :)


Andrew is headed to the PICU. We almost made all 5 rounds without going down there.

Another long day

Well, Andrew still isn't improving. We had rapid response come to assess him. They are a group of people from the PICU and respiratory specialists. They took another X-ray and it looks almost the same as the previous x-ray with a possible small improvement. His lungs are still fuzzy. They are still giving him lots of lasix (a fast acting diuretic) to try to get the fluid off his lungs. Anyway, Andrew is a fighter and has been able to sustain over 90 breaths per minute for a few days straight. We are just hoping that he can pull out of this before he gets too tired of breathing and ends up in the PICU.

Tuesday, May 17, 2011

Neupogen it is

Things are still pretty difficult up here. Andrew's still not breathing on his own, and he's still almost 2 pounds overweight. I thought throughout this whole thing that we got off (relatively) easily because it seems like older kids, and especially teenagers, just felt a whole lot worse. It turns out that with these kinds of infections with AML patients, babies actually do worse than older kids, accumulating hard-to-clear fluids and just feeling a lot worse.

So, bad news first. Andrew didn't just have strep--he had multiple gram-positive organisms in his blood. The micro people are still preparing their report as to what it all is, but it's definitely more than just strep. Depending on what the organisms are, we may or may not have to pull his line (some are notorious for attaching to the line and staying there). He's getting lasix (a diuretic) to try to control the fluid overload. Also, he needed another platelet and another blood transfusion. He hit 40.2C today (104.4F), which is a new record for him.

The good news is that he's finally started to pee significant amounts again! This is great news! I can see the weight come off of his face, hands, and legs really well. His eyes, especially are more than just squints. This is the best news today for sure. Also, none of the repeated blood cultures that they've drawn have grown anything since the first day, meaning that the vancomycin worked fantastically well on the bacteremia in his blood. It also means that although they may have to pull his line, it's less likely. Another bit of good news is that he's not sick enough that he throws up the tylenol, or else we wouldn't be able to get his fever down. They really need to approve IV tylenol sometime soon, for all of our sakes.

We have debated back and forth since Andrew got this infection whether or not to give him Neupogen. Neupogen is an enzyme that stimulates granulocytes (Neutrophils are granulocytes). Historically, oncologists have been wary of giving it to AML patients because it revives the marrow (shortening the length of neutropenia by a few days), but it also spurs the growth of cancer cells, if there are any. I'm not any sort of cancer girl, and I really don't know much about the overall theory of what the chemotherapy really is doing to him (other than the actual mechanism of the different chemos). I don't know if they expect it to wipe most of the cancerous cells out and leave just a few to his own body or if they really think they obliterate all of them. Depending on which theory it is, it influences this decision for us. Our primary oncologists said that theories of an increased risk of relapse are not supported by the data, and he didn't see any significant downsides, so we went with the neupogen shot. The only downside is it might not work (and thus it would be a shot for nothing), or it might work well enough to make his bones really achy. Either way, though, we didn't see any significant downsides.

Thanks so much for the prayers, I'll post more later.

Monday, May 16, 2011

Things are Hard

I'll try to write a quick update on what's been happening with Andrew. His fever has gone down with the help of Tylenol every 4 hours, but it returns to 39.3 (around 103F) quickly without it. Andrew is having more and more trouble breathing. He has what is called third space, which means fluid accumulates in places it shouldn't. He's become very puffy, his abdominal cavity is pretty large, and he is starting to look like the michelin man we had back in round 1. His chest X-ray this morning was clear, but about an hour ago, it showed fluid accumulating in his lungs. This is not good news. We are borderline PICU at the moment, so we're hoping and praying things will turn up.

He's on Zosyn and Vancomycin (antibiotics for the infection), TPN & lipids (intravenous nutrition), benadryl, ondansetron (for nausea), dilaudid (for pain), Tylenol (for his fever and pain), maintenance fluids with dextrose, and his normal anti-fungal and anti-pneumonia medications (voriconazole & septra). We've had a few scares with low saturation and his lips turning blue, and he's also hyperventilated at 80+ breaths/minute, but he's with it enough to constantly push away the oxygen and even sit up in his crib occasionally.

I'm worried because we're only a week out from his last chemo, and it'll be at least another 3 or 4 days before his counts even begin to come up. In other words, he's still bottoming out. I've never seen him get over infections before he starts coming up pretty significantly.

Please pray for Andrew right now that he'll be able to clear the fluids and the infection, keep his fever down, and take deeper breaths. And Mom, he'll be okay, I'm sure, so don't freak out or anything.

Sunday, May 15, 2011

Rough day

We I want to end with good news, so here is why the day has been rough. Andrew has been throwing up a lot of the day and still has a bad fever. Sometime this morning his Oxygen levels started to drop dramatically. This happens sometimes when he is on certain pain medications and is asleep. While sleeping dilaudid will make his Oxygen % drops to about 87 (from 100). Today it was dropping to the about 75 while he was awake. Sometime this afternoon he started screaming and was absolutely unconsolable. The doctor listened to his lungs and they sound clear. Anyway, we are trying more pain killer and also trying to keep a nasal cannula in his nose to keep his oxygen up. Andrew really needs your prayers right now.

Now the good news. Andrew's bacteria is Streptococcus viridans, which apparently isn't known for causing biofilms on central lines (I have yet to see data which reflects this). Also, his blood cultures from yesterday hadn't shown any bacterial growth as of this morning. They may still show growth later, but as of right now we think that the his blood infection is getting under control. Also while he was screaming today we noticed that he has two new teeth on top, which might have been a contributing factor to his pain the other day.

Saturday, May 14, 2011

Rally For Tanner

It was Tanner's time to leave this earth today. I'm heartbroken for his family, especially his sweet mother. I looked outside this morning, and it just looked like bleah. I was so bummed that he would have to leave on such a cruddy-looking day:

Soon enough, though, the clouds parted. It was gorgeous. What a fitting tribute to him.

He and his parents have had so much courage these last few months. I cannot even begin to fathom the anxiety and hardship they have endured, but they have endured it so well. They have met their trials with the determination to be faithful. It would be so hard to say goodbye, but they must be so proud of him. I sure am. He was worthy to serve a mission for the Lord here, and he'll be worthy there. How excited he must be to be freed from his cancer and be able to serve the Lord on the other side.

Thank you for your prayers for him and his family. Please continue to pray that they'll feel strength and peace in the coming weeks and months. They have been such dear friends to us, helping us to have courage and keep moving on.

Fever dropping

Andrew's blood cultures came back positive for Streptococcus. The bad news is that you never want bacteria in your blood and if the bacteria form a biofilm on his central line then the line will have to be removed. The good news is that we know what it is and strep is generally responsive to vancomycin, which they started last night. His fever of 104F (40C) and his pulse of 170 are slowly dropping, probably thanks to the Tylenol.


It's been a while since we uploaded photos, so here goes nothing:

Playing with Andrew at home

We have a really cute video that we might post later. We leave the man pantsed because it's just so much easier to change his diaper every 2 hours without having to deal with pants.

Andrew got these bright red rosy cheeks from the cytarabine. They're here to stay for a while, it seems.

Manny giving the last L-asparaginase shot. Last chemo ever!

Until Thursday, he was super happy and energetic

I know Stew likes D pod, but I like the view from here.

Friday, May 13, 2011

When it rains, it pours

Andrew has been having a rough go lately. Until a few hours ago, he has needed pain medication every hour and a half around the clock (it was the maximum dose they would give), but he would last until 10 minutes before his next dose. The only analgesic I had left was nursing, and that seemed to help a lot. Today we were able to stretch out his pain medications for 2 hours and all of the sudden, he stopped needing pain meds. I just waited and waited and although he was tired and groggy, he didn't seem to be in pain. He has been sleeping for most of the last two days (only getting up occasionally to eat), but he suddenly spiked a fever at 7pm. They've drawn cultures and started antibiotics and Tylenol every 6 hours (so that it wears off and they can see where his fever is). Unfortunately, the vancomycin gave him pretty uncomfortable Redman's, which Benadryl helped alleviate. That was probably the worst part of today--seeing him purple. Everything else I have dealt with before, but it was just so dramatic and uncomfortable, it made me a bit scared.

Actually, that was the second worst part of today. The worst part was learning that Tanner's cancer is alive and well, meaning his transplant won't happen as planned. Please include Tanner in your prayers.

Believe it or not, we're actually doing quite well. Although it's obvious now that Andrew has an infection of some sort, I'm feeling peaceful and even happy. I know I've had help from the other side. The exhaustion that I've experienced these last few days has been hard, but I've been able to get up and take care of him during the night. We've had a lot of visitors lately that have cheered us up immensely. As always, thanks so much for your support!

Thursday, May 12, 2011

back on dilaudid

Andrew had a rough night last night. Lizzie said that all night, he would stand up in his crib and start to scream. When he tried to sleep he would breath erratically and be taking short gasps every breath. He had the exact same symptoms last round and dilaudid (hydromorphone) was the only thing that ended up helping with the pain. Lizzie tried giving him ativan, tylenol, and oxicodone. Finally, at 5:30 this morning she called me up and we switched places so that she could get some sleep. We had the resident come and assess him so that we could give him dilaudid. The resident assessed Andrew but said that she would like to wait until the nurse practitioner(NP) for the ICS unit came in to give Andrew dilaudid (being cautious I guess). Long story Andrew was able to eventually fall asleep on my chest but he didn't get dilaudid until about 8am. The NP said that she thinks that it might be mucositis. Basically, because he has very virtually no immune system right now, it is very easy for the throat to get inflamed. Sometimes babies will wheeze when they get it because they have such small airways.

On a kinda funny note, Murphy's Law type of funny. Last night about 1:30 in the morning the hose that connects our washing machine to the apartment's water blew off. I was just going to sleep and so I heard it from the bedroom. I ran into the kitchen only to find water jetting out of the washing machine hook up. I turned off the water and got it cleaned up by about 3am. Its not something that you normally laugh about, but you kind of have to when you are running on about 2 hours of sleep.

Sunday, May 8, 2011

Happy Last Chemo!!!

Today is the most fabulous day--my first Mother's day and Andrew's last chemo day! What an awesome Mother's Day gift!!! He just got his L-asparaginase shot (thanks, Manny!). I'll never forget watching that first dose of daunorubicin go into his body last November and how heartbreaking that was for me. I can't believe we've made it this far! We'll be here for count recovery as usual, and then we'll be outta here, hopefully for good!

They decided to keep his line in until the aspirate in a couple of weeks, which will be when his counts recover (to at least an ANC of 700). We hope and pray he will stay healthy and happy and not have fevers.

Thanks for your support everyone! We've appreciated the meals and visits immensely. And how much I appreciate my sweet momma, who's been there for me this whole time, even though she's far away. Love you mum!

Monday, May 2, 2011

Here at Home

Wow, that didn't remotely feel like a hospital stay. Andrew's shot went okay--he cried for a few minutes, but not as hard as when he and Stew bonked heads the other day. The nurse told me about the side effects of the L-asparaginase, the redness, the asthma-like attack, and so I was paranoid looking for any sort of sign of a bad reaction for the next day or so. He's done just fine, thankfully. Apparently, it's almost always the teenagers who get bad reactions from the shot. Man, they seem to get the brunt of a lot of things :(.

Andrew's been feeling okay lately. It's been AMAZING to spend this time at home, waiting for his counts to drop instead of sitting in a hospital room trying to keep him out of trouble. At this point he's sworn off solids completely (which happens every round), and he's needing to nurse a lot, but otherwise he's doing fine.

The plan for the next few weeks is to go back in on Friday (10am, I think), do exactly what we did last weekend (4 doses of cytarabine, and the L-aspar shot), and then do count recovery for a few weeks. As soon as his counts have recovered (I think they require an absolute minimum of 700 for his ANC), then they'll do one last bone marrow aspirate to see if there are any cancer cells hiding out in there. I'm getting really excited for his last chemo on Sunday. After Sunday, he can grow back the crazy hair he was born with!

I think there has been a bit of a disagreement between some people at Primary's over Andrew's line. Having one lumen clotted off is a significant infection risk (but so is having a central line in the first place), but what they want to do about it seems to be different. One doctor said he was borderline for having it re-placed when it first clotted off last round but said we were so close, he thought we should wait. One NP a few days ago was insistent on trying more TPA to see if she could un-clot it (I was not a fan--forcing in saline is what has made it break twice before). Also, they've already tried TPA at least half a dozen times before, and I'm not even sure if clotting is the problem. The NP said she would see if they could re-place it by this Friday. I haven't heard anything, so I guess the doctor won out on that one. I suspect that we'll probably get the line out after they finish doing daily blood draws in about 2 weeks, and before his aspirate, but that's just a guess. It's kind of a compromise between letting it stay in until the aspirate and taking it out ASAP because I doubt they'd make us go through being poked for blood draws every day (although they could just put in a PICC). We'll have to see.

I was under the assumption that after we finish he'd be in every week for blood draws, but that assumption was incorrect--he'll be in once a month for the next little while, once every other month, quarterly, and then they'll want to see him every year until he's 18. For everything else, it's going to be his normal pediatrician. That is such a weird thought! Heck, Andrew doesn't even have a normal pediatrician. We were switching insurances back and forth right around the time Andrew was diagnosed, so I'm not even sure which one I'd go to.

We've been praying hard for Aubree and Tanner--Aubree that she can have her bleeding resolve and Tanner that he can be ready to go for transplant! We check their blogs many times for updates on how they're doing.