Thursday, December 30, 2010
Tuesday, December 28, 2010
One Day More!
I sit here - after almost a month since our last post - and I think about the most incredible and intensely emotional period that our family has just experienced. My daughter is 8 1/2 months old and, as of today, has spent the last 4 fighting leukemia. The first three months were inpatient. This past month has been at home with daily outpatient care. And this past month has been so amazing that it is almost enough to make me forget the first three.
On Monday, January 3, 2011, we will be readmitted to Lucile Packard Children's Hospital to the Bone Marrow Stem Cell Transplant Unit.
All I can think of - the only thing I can think of - is the lyric from Les Miserables:
I am frozen in a state of anticipation. We are either at the brink of the end of our fight against cancer, or we are at the brink of the end. I don't know how to anticipate anything other than bringing her home in 5-7 weeks from today. This assumes that all goes well with her transplant and that her immune systems safely begins establishing itself within that timeframe. But, I still fear - with a cold reality that it feels like no one else could ever know - that this could all go horribly wrong in what will seem all too quickly. And then, all I can think of is the plea:
On Monday, January 3, 2011, we will be readmitted to Lucile Packard Children's Hospital to the Bone Marrow Stem Cell Transplant Unit.
All I can think of - the only thing I can think of - is the lyric from Les Miserables:
I am frozen in a state of anticipation. We are either at the brink of the end of our fight against cancer, or we are at the brink of the end. I don't know how to anticipate anything other than bringing her home in 5-7 weeks from today. This assumes that all goes well with her transplant and that her immune systems safely begins establishing itself within that timeframe. But, I still fear - with a cold reality that it feels like no one else could ever know - that this could all go horribly wrong in what will seem all too quickly. And then, all I can think of is the plea:
Tuesday, November 30, 2010
She Amazes Me
Exciting update: Clara was full of energy tonight after her first feeding in 5 days (and coincidentally her first oral chemo dose).
She is standing with support at the hips and gives snuggles upon request and without. She played with three toys on her ExcerSaucer at a time (a toy in each hand and looking at or gumming another).
Then she completely pooped out and half slept half watched as I changed her for bed, wrapped her up, put her in bed, and gave her her oral meds.
I have never seen a baby that was so high on happiness and then just put herself to sleep. She amazes me. I love her so much.
She is standing with support at the hips and gives snuggles upon request and without. She played with three toys on her ExcerSaucer at a time (a toy in each hand and looking at or gumming another).
Then she completely pooped out and half slept half watched as I changed her for bed, wrapped her up, put her in bed, and gave her her oral meds.
I have never seen a baby that was so high on happiness and then just put herself to sleep. She amazes me. I love her so much.
Learning the "Day Hospital" Life
So, since we were discharged from the hospital, Clara has become a "Day Hospital" patient. The Day Hospital is where Oncology patients go for outpatient treatment. Since they aren't open on the weekend, we go to "Short Stay" on Saturday, which is where all outpatients go for the rest of the hospital. On Sunday, everything is closed and we have been approved to go without any IV therapy for her fungus and we get the day off!
Being outpatient has been incredible and incredibly depressing. It has been incredible to have Clara at home, yet at the same time, it is like a giant tease because she still isn't well. She needs IV antifungals once a day (which have been around the time she goes to bed and can make bedtime hairy) and she needs oral medicines 3 times a day. Plus, we are now back to feeding her through an NG because she has lost .1kg of weight each day over the past 5 days. That is a LOT to manage.
The first couple of days weren't bad. We went to short stay on Saturday which was actually fairly short! (4 hours) And Sunday we had off. I was really loving having her at home but there were some very difficult times as we learned where we keep all these medical supplies and our concerns about her NOT eating became a greater and greater stressor.
But the last two days have been really hard. Clara's potassium levels have been so low that they haven't been able to give her her antifungal that requires it be given at the hospital because it is so dangerous. So they have to draw her blood, wait for her labs to come back, give her an IV bolus of potassium which takes an hour (so far this has taken about 3 hours), THEN we give her the antifungal which takes 2 hours. Somehow the first day that actually took 7 hours. Today, we added IV chemo that we thought was going to just be pushed by hand into her Central line but then we found out (after Alan had already shown up to pick us up) that it needed to be redosed to be given over 30 minutes so we had to wait over an hour for the pharmacy to refill the order plus wait for it to be given.
An additional issue was her NG. I have already mentioned our concerns about her weight lately. We pulled her NG out on Thursday so I wouldn't be tempted to bolus feed her through it over the weekend. I kinda just wanted to see her pretty face without tape all over it; plus, it seemed she was ready to eat on her own as she had been nursing on top of all the feeds I was giving her through her NG. After the clear weight loss (which we saw when she was weighed on Monday), I asked if we should put back in an NG. The doctors said we could weight until Wednesday. I voiced that two days wasn't going to be enough time to see an improvement that would make a difference in her weight. She was just eating so very little (maybe an ounce at each feeding and there were only about 8 feedings a day). After seeing a significant decrease in the number of diapers yesterday day and night and after seeing she lost another .1kg yesterday, I asked for an NG and formula as soon as we were put in our room for the day. It practically took demanding an NG for them to understand that I knew what an NG was, yes she had had one before, no I didn't want to wait for the doctors to see her. She was getting to the point that I was concerned we would be looking at dehydration.
The nurse finally came to put it down and I told her I was concerned that she had measured incorrectly because the length seemed really long and we've had her NG be too long before and become an NJ (the tube ends up in the intestines instead of the stomach). An already long story slightly shorter, she put it down and it WAS too long. The food took all day to get to us and when it did (just as we were about to leave) Clara threw up a bunch of bile - that looked like intestinal bile. She looked very clinically lethargic, she had diarrhea and her heart was racing. All the sudden, they were talking about admitting her overnight to give her IV fluids. I was so pissed. I had been telling them she needed food, I had to force them to give her an NG, which they put in wrong, and then now they want to keep us overnight which was actually just a really big jump too far in my opinion.
It was a really hard day. I know it will get better, and I will learn how to be better prepared in case the day that is supposed to be 3-4 hours becomes twice that. I'm just having a really hard time keeping a happy face, being polite and respectful but still an advocate for my daughter. All the nurses are new to me and me to them, so I am having to build new relationship with them as a Mom that knows what's up and is involved without being overbearing. Until that happens, I just feel like I am a bother and overbearing and have to put on a happy face when I really don't feel that way. I feel depressed but don't have time to be. Her IV meds are due and I have to give her her oral chemo and nightly oral meds. Plus, eat? Oh yea. There is still no food in the house and all I had today was a cream cheese danish, coffee, and then a really healthy (*read sarcasm*) burger and fries late this afternoon once I was at a breaking point from stress and lack of food.
I know this was a long post, and I hope it made some sense to you without raising too much concern. It is just really hard some days. So many of you have begun sending messages of "Thinking of you...Hang in there." We are at this new chapter and I'm just not sure how "hanging in there" can be sufficient or sustained. I look at my daughter and I love her so much. And all this crap completely muddys the waters. I WILL do ANYTHING FOR HER. I would do this for 20, 50 years if I had to. I just don't know how I will.
Here's to tomorrow. I am sure it will get easier as we learn the new routines.
Being outpatient has been incredible and incredibly depressing. It has been incredible to have Clara at home, yet at the same time, it is like a giant tease because she still isn't well. She needs IV antifungals once a day (which have been around the time she goes to bed and can make bedtime hairy) and she needs oral medicines 3 times a day. Plus, we are now back to feeding her through an NG because she has lost .1kg of weight each day over the past 5 days. That is a LOT to manage.
The first couple of days weren't bad. We went to short stay on Saturday which was actually fairly short! (4 hours) And Sunday we had off. I was really loving having her at home but there were some very difficult times as we learned where we keep all these medical supplies and our concerns about her NOT eating became a greater and greater stressor.
But the last two days have been really hard. Clara's potassium levels have been so low that they haven't been able to give her her antifungal that requires it be given at the hospital because it is so dangerous. So they have to draw her blood, wait for her labs to come back, give her an IV bolus of potassium which takes an hour (so far this has taken about 3 hours), THEN we give her the antifungal which takes 2 hours. Somehow the first day that actually took 7 hours. Today, we added IV chemo that we thought was going to just be pushed by hand into her Central line but then we found out (after Alan had already shown up to pick us up) that it needed to be redosed to be given over 30 minutes so we had to wait over an hour for the pharmacy to refill the order plus wait for it to be given.
An additional issue was her NG. I have already mentioned our concerns about her weight lately. We pulled her NG out on Thursday so I wouldn't be tempted to bolus feed her through it over the weekend. I kinda just wanted to see her pretty face without tape all over it; plus, it seemed she was ready to eat on her own as she had been nursing on top of all the feeds I was giving her through her NG. After the clear weight loss (which we saw when she was weighed on Monday), I asked if we should put back in an NG. The doctors said we could weight until Wednesday. I voiced that two days wasn't going to be enough time to see an improvement that would make a difference in her weight. She was just eating so very little (maybe an ounce at each feeding and there were only about 8 feedings a day). After seeing a significant decrease in the number of diapers yesterday day and night and after seeing she lost another .1kg yesterday, I asked for an NG and formula as soon as we were put in our room for the day. It practically took demanding an NG for them to understand that I knew what an NG was, yes she had had one before, no I didn't want to wait for the doctors to see her. She was getting to the point that I was concerned we would be looking at dehydration.
The nurse finally came to put it down and I told her I was concerned that she had measured incorrectly because the length seemed really long and we've had her NG be too long before and become an NJ (the tube ends up in the intestines instead of the stomach). An already long story slightly shorter, she put it down and it WAS too long. The food took all day to get to us and when it did (just as we were about to leave) Clara threw up a bunch of bile - that looked like intestinal bile. She looked very clinically lethargic, she had diarrhea and her heart was racing. All the sudden, they were talking about admitting her overnight to give her IV fluids. I was so pissed. I had been telling them she needed food, I had to force them to give her an NG, which they put in wrong, and then now they want to keep us overnight which was actually just a really big jump too far in my opinion.
It was a really hard day. I know it will get better, and I will learn how to be better prepared in case the day that is supposed to be 3-4 hours becomes twice that. I'm just having a really hard time keeping a happy face, being polite and respectful but still an advocate for my daughter. All the nurses are new to me and me to them, so I am having to build new relationship with them as a Mom that knows what's up and is involved without being overbearing. Until that happens, I just feel like I am a bother and overbearing and have to put on a happy face when I really don't feel that way. I feel depressed but don't have time to be. Her IV meds are due and I have to give her her oral chemo and nightly oral meds. Plus, eat? Oh yea. There is still no food in the house and all I had today was a cream cheese danish, coffee, and then a really healthy (*read sarcasm*) burger and fries late this afternoon once I was at a breaking point from stress and lack of food.
I know this was a long post, and I hope it made some sense to you without raising too much concern. It is just really hard some days. So many of you have begun sending messages of "Thinking of you...Hang in there." We are at this new chapter and I'm just not sure how "hanging in there" can be sufficient or sustained. I look at my daughter and I love her so much. And all this crap completely muddys the waters. I WILL do ANYTHING FOR HER. I would do this for 20, 50 years if I had to. I just don't know how I will.
Here's to tomorrow. I am sure it will get easier as we learn the new routines.
Friday, November 26, 2010
Home Again! Home Again!
Our Doctors worked some magic today and managed to convince "short stay" to take Clara tomorrow. They have been saying all week that they wouldn't take her (to give her her ampho on Saturday); so, we weren't anticipating being discharged until Saturday and maybe not even until Monday since it is a holiday weekend and the proper people would be here to train us for taking care of Clara's new central line.
Fortunately, the new attending who came on service today knows Clara well and trusts Alan and I. He talked to the Director of Short Stay in person and convinced him to take us tomorrow. In the span of 3 hours, we found out we were going home and were walking out the front doors. I felt like we had escaped from prison. I was just sure someone was going to realized they had overlooked something and that we couldn't leave.
It is an amazing feeling to have her at home for an indefinite time. Please pray that this time at home and under antifungal treatment will be effective and that we can continue to fully rejoice in this delay before transplant.
Fortunately, the new attending who came on service today knows Clara well and trusts Alan and I. He talked to the Director of Short Stay in person and convinced him to take us tomorrow. In the span of 3 hours, we found out we were going home and were walking out the front doors. I felt like we had escaped from prison. I was just sure someone was going to realized they had overlooked something and that we couldn't leave.
It is an amazing feeling to have her at home for an indefinite time. Please pray that this time at home and under antifungal treatment will be effective and that we can continue to fully rejoice in this delay before transplant.
Lung Surgery
As previously mentioned Clara had her lung surgery on Monday. She also had a Hickman line placed to replace her PICC line (exactly like the wikipedia picture). This was a lung lobe resection of her bottom right lobe. That means that the entire bottom lobe of her right lung was removed. There are two lobes in the left lung and three in her right. Ideally, there will be no really differences in her ability to breathe and perform sports with the missing lobe. Since she is young, she should adjust to the missing lobe well as the rest of the lung compensates. The image below depicts her procedure (though she had an infection rather than cancer) and the website describes well information about a lung lobe resection as well as where the scar is for this procedure.
The procedure didn't go exactly perfectly. The surgery was scheduled for 2 hours (the anesthesiologist thought it would be 3) but ended up being 5 hours long. Apparently the lung was very inflamed and "sticky" which made it difficult to remove. We found out later that the infection was described as coral-like (which seems a bad texture to have in your lung). During the surgery a bit of fluid moved from the right lung to the left lung (the surgery was performed with her on her side) and it clogged her breathing tube. The anesthesiologist initially thought Clara's O2 saturation dropped to ~50% for around 10 minutes. There was some concern that this could have damaged her kidneys and maybe brain. We later found out from the operative note that it was only 2.5 minutes (time must run slower in the OR) and that she wasn't as concerned. Nevertheless, the anesthesiologist was happy that everything returned to pre-surgery status (peeing and playing).
After the surgery, Clara was kept intibated and sedated until Tuesday so that she could have some rest to let the body start to recover. I imagine partly because it is difficult to keep a baby still and partly because they were a little worried about extibation. They extibated on Tuesday a little early when she was demonstrating correct pressure around a leak in the breathing tube (better than the respiratory therapists had expected).
They moved us down to the oncology unit on Wednesday evening. This was great because we could actually sleep in the room which I did along with Brooke on Wednesday night. Clara actually slept pretty well and returned to her normal eating schedule. By normal feeding schedule she was able to have ~120ml of milk through her NG tube every 3 hours.
On Thanksgiving day they took out her drainage tube (this was used to drain and fluid from her surgery site). She had been doing well with it and wasn't really draining anymore. What is great about this is that once the tube is out we could finally pick her up again. She loved getting to move around again. She ended up with an air bubble under her skin from the surgery. There isn't a problem with this and it will slowly go away but it is freaky when we pick her up and you hear a squishy sound and feel rice crispies under her skin.
Thursday evening we removed Clara's NG tube. This was more for Brooke so that she wouldn't be tempted to use it to feed her. We are trying to move away from NG feed and have permission to "starve" her until she gets used to eating from the breast again (and maybe will try a bottle). She has gotten so used to the NG feeds that she really only thinks of feeding at the breast as more of an immediate satiation but doesn't eat until she is full. I think that she has associated just short feeds with suddenly getting full. And she hasn't touched a bottle since really very early on. Of course, if she loses too much weight we'll have to reinstate the NG tube.
All of this culminates in us being able to go home TODAY! This is a mixed blessing in that it would be much better if she were able to get a stem cell transplant as soon as possible but will help us regain some sanity after more than three months in the hospital. We have to wait for the fungal infection to go away before transplant so we will be waiting until the beginning of the year. Hopefully this gives the anti-fungals time to kill everything. We are most worried about the nodule of fungus on her kidney so this will be the big thing to watch for. In the interim she will be getting some low doses of chemotherapy to keep her bone marrow relatively empty. Again, this isn't the ideal scenario, but it is the only real scenario because the infection would take over her if we tried the transplant now.
We will be having to come in every day (except Sunday) for her to receive some medications (right now one of her anti-fungals but soon the chemos as well). The anti-fungal takes 2 hours to run plus she will be getting labs and such so we are anticipating 4 hours per day in the hospital. This doesn't sound too bad to us because we have gotten so used to being here. Of course, we need to get Brooke a car ASAP so that she can take care of these errands while I am able to actually do some work. Either way, we are looking forward to some normal time with her at home.
The procedure didn't go exactly perfectly. The surgery was scheduled for 2 hours (the anesthesiologist thought it would be 3) but ended up being 5 hours long. Apparently the lung was very inflamed and "sticky" which made it difficult to remove. We found out later that the infection was described as coral-like (which seems a bad texture to have in your lung). During the surgery a bit of fluid moved from the right lung to the left lung (the surgery was performed with her on her side) and it clogged her breathing tube. The anesthesiologist initially thought Clara's O2 saturation dropped to ~50% for around 10 minutes. There was some concern that this could have damaged her kidneys and maybe brain. We later found out from the operative note that it was only 2.5 minutes (time must run slower in the OR) and that she wasn't as concerned. Nevertheless, the anesthesiologist was happy that everything returned to pre-surgery status (peeing and playing).
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| Clara on Monday after her surgery. |
After the surgery, Clara was kept intibated and sedated until Tuesday so that she could have some rest to let the body start to recover. I imagine partly because it is difficult to keep a baby still and partly because they were a little worried about extibation. They extibated on Tuesday a little early when she was demonstrating correct pressure around a leak in the breathing tube (better than the respiratory therapists had expected).
They moved us down to the oncology unit on Wednesday evening. This was great because we could actually sleep in the room which I did along with Brooke on Wednesday night. Clara actually slept pretty well and returned to her normal eating schedule. By normal feeding schedule she was able to have ~120ml of milk through her NG tube every 3 hours.
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| Clara on Wednesday night. |
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| Clara on Thanksgiving! |
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| Clara today! |
We will be having to come in every day (except Sunday) for her to receive some medications (right now one of her anti-fungals but soon the chemos as well). The anti-fungal takes 2 hours to run plus she will be getting labs and such so we are anticipating 4 hours per day in the hospital. This doesn't sound too bad to us because we have gotten so used to being here. Of course, we need to get Brooke a car ASAP so that she can take care of these errands while I am able to actually do some work. Either way, we are looking forward to some normal time with her at home.
Wednesday, November 24, 2010
Current Favorite Pictures
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| The face explains it all. She had been knocking the fish off her Bumbo tray and leaning over to find it and pick it back up. Was one of her recent demonstrations of her newly acquired skill of object permanence |
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| My absolute favorite picture right now. She looks exactly like my sister Lauren did at about 2 years old. This is post-op day 2 after neuro-surgery. She looks amazing doesn't she? I was so proud of her! |
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| Snuggles as Mommy puts the bug to sleep. |
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| Grandma and I went shopping for winter size 6 clothes for Clara. This bear "snow suit" like outfit was ADORABLE! We wrapped her up for her transport from the house back to the hospital on Sunday night. |
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| The morning of her lung surgery. She truly was happy. I pulled her into bed with me after she woke up around 6:30am. She immediately settled into this arms-up position. She is so precious to me. |
Saturday at Home
Among all the pictures and home videos we took on Saturday and Sunday, I'm only able to post a few at a time from my phone into an email that will update the blog. But this give you a taste of some of our moments at home.
The Dr on service last week had mentioned how she didn't think Clara needed the break as much as I needed it. Well, the weekend proved her so wrong. Clara THRIVED on the time at home. She started babbling, squealing, hollaring, and laughing non-stop. In the hospital, we were having to find more and more ways to keep her occupied and entertained. At home, she sat next to Grandma on the couch for an hour and just smiled and kicked her right foot as happy as can be. If you carried her from one room to another, she would tighten her whole body and squeal in anticipation of what was coming. You can ask her for snuggles and she will dive face first into your chest. She has a preference for Mommy but she is reaching towards people if she wants to move into their arms. She is showing object permanence and will even anticipate you showing up on the other side of an object that you've walked or hidden behind. She just flourished.
Thanks to our nurse when we were discharged, the Doctors didn't require us to go into the day hospital for the administration of one of her more dangerous anti-fungals. It permeates her tissues; so, they just gave her a day off - which we spent at home: playing, watching football, eating homemade chili, and enjoying being together as the rain poured down outside our window.
Oh, and FYI, no alcohol was served to the baby before, during or after the taking of this picture. :-)
The Dr on service last week had mentioned how she didn't think Clara needed the break as much as I needed it. Well, the weekend proved her so wrong. Clara THRIVED on the time at home. She started babbling, squealing, hollaring, and laughing non-stop. In the hospital, we were having to find more and more ways to keep her occupied and entertained. At home, she sat next to Grandma on the couch for an hour and just smiled and kicked her right foot as happy as can be. If you carried her from one room to another, she would tighten her whole body and squeal in anticipation of what was coming. You can ask her for snuggles and she will dive face first into your chest. She has a preference for Mommy but she is reaching towards people if she wants to move into their arms. She is showing object permanence and will even anticipate you showing up on the other side of an object that you've walked or hidden behind. She just flourished.
Thanks to our nurse when we were discharged, the Doctors didn't require us to go into the day hospital for the administration of one of her more dangerous anti-fungals. It permeates her tissues; so, they just gave her a day off - which we spent at home: playing, watching football, eating homemade chili, and enjoying being together as the rain poured down outside our window.
Oh, and FYI, no alcohol was served to the baby before, during or after the taking of this picture. :-)
Headed Home
When I was being trained to take care of Clara's PICC line and give her IV meds, the nurse mentioned being careful to not tighten her carseat strap too tight.
It started instant tears. I hadn't thought of being able to put her in her carseat. We had taken it out of the car months ago and it had just been collecting dust along with everything else in her room.
Straping her in on the cold, rainy, Friday night was the most incredible feeling. I was so proud. We headed to our mist frequented restaurant where the entire staff knows Alan and I. I couldn't wait to show them her cute face as they have only known of her situation.
We were greeted with champagne from the general manager and everyone was cooing over her. I was so proud to show her off. We had a great meal which she adorabley slept through.
It was a great start to our weekend in the real world.
It started instant tears. I hadn't thought of being able to put her in her carseat. We had taken it out of the car months ago and it had just been collecting dust along with everything else in her room.
Straping her in on the cold, rainy, Friday night was the most incredible feeling. I was so proud. We headed to our mist frequented restaurant where the entire staff knows Alan and I. I couldn't wait to show them her cute face as they have only known of her situation.
We were greeted with champagne from the general manager and everyone was cooing over her. I was so proud to show her off. We had a great meal which she adorabley slept through.
It was a great start to our weekend in the real world.
The Fear of Going Home
I was so nervous about taking Clara home from the hospital. I had always heard that, after the birth of your child, it can be nerve-racking to not have the nurses around to help. While that wasn't the case for me then, it was definitely the case after having lived in 1 North for 3 of Clara's 7 months!!!
What was I supposed to do without chucks? (the waterproof pad that the nurses wish away when she pees, poops or vomits) What was I supposed to do without the laundry service that sterilized said chucks and sheets? How would Alan and I eat without our built-in babysitters fighting over who would hold her while we were gone?
Well, the nurses outfitted us with chucks when we left along with diapers, wipes, a stethescope, sterile water, etc You name it, they gave it to us to take home. And I wouldn't have missed a minute with her to a babysitter. She was amazing!
What was I supposed to do without chucks? (the waterproof pad that the nurses wish away when she pees, poops or vomits) What was I supposed to do without the laundry service that sterilized said chucks and sheets? How would Alan and I eat without our built-in babysitters fighting over who would hold her while we were gone?
Well, the nurses outfitted us with chucks when we left along with diapers, wipes, a stethescope, sterile water, etc You name it, they gave it to us to take home. And I wouldn't have missed a minute with her to a babysitter. She was amazing!
Friday, November 19, 2010
Back Home
Clara is REALLY going home today! She has a delay before her lung surgery and they are sending her home until that is scheduled. At this point, Clara has lived in the hospital longer than she has lived here. Hopefully she will not be freaked out by the lack of beeps, constant nurse interruption, and ability to turn out lights. Brooke jokes that through the process of taking care of Clara in the hospital she has her MRN (Mother's Registered Nurse) degree and finished it with all of her training to take care of Clara when she comes home. She had to learn to change out parts of the PICC lines, give meds, and other important stuff that I am still not caught up on. Of course, any little issues and we have to rush to the emergency room.
The CT yesterday showed that the lung absess more organized and slightly smaller (1.7x1.5cm) down from (2cmx2cm). Hopefully this means that the antifungals are working. They still plan to do surgery to remove something, but we are waiting to hear if it is an entire lobe of her lung or a different procedure. We also don't know if the surgery will be this Tuesday or the Tuesday after Thanksgiving. Obviously, a longer wait at home would be preferable. The difficulty in scheduling is getting a surgeon who is good at this procedure because apparently it is very difficult.
Unfortunately, the docs also noticed a nodule of aspergillus on her kidney. It is pretty small (7mmx5mm) but the doctors won't be trying to remove it because of its location. Hopefully it resolves with the anti-fungal medications. Speaking of anti-fungals, it is really nice knowing that is is a fungal infection and only getting 2 IV medications per day instead of something like 15 when they had to cover all their bases.
We also got a new MRD measurement from Clara's bone marrow. It has actually dropped now to 0.04% from 0.21%. There are two potential reasons for this: 1) Total count of cells increases while leukemia stays idle or 2) immune response to the leukemia cells. Both are good scenarios and are likely taking place. Option 1 fits well because her counts are almost 5x what they were at the 0.21% marrow draw (though I don't know how the peripheral count matches the bone marrow count). Option 2 is in play more because of the aspergillus infection. Aspergillus is fought with a cell-mediated response which should also attack the leukemia cells. It is not going to kill them all, but may help counteract the delay in stem cell transplant.
So the new treatment plan is 4 weeks of antifungals before her re-workup for transplant. If the workup looks good the plan for transplant will be ~Jan 3. There will also be some light chemo before then to keep her marrow cell count low. Hopefully at the beginning of the year all of the infection will be gone and we won't get a flair up as soon as we knock out her immune system.
The CT yesterday showed that the lung absess more organized and slightly smaller (1.7x1.5cm) down from (2cmx2cm). Hopefully this means that the antifungals are working. They still plan to do surgery to remove something, but we are waiting to hear if it is an entire lobe of her lung or a different procedure. We also don't know if the surgery will be this Tuesday or the Tuesday after Thanksgiving. Obviously, a longer wait at home would be preferable. The difficulty in scheduling is getting a surgeon who is good at this procedure because apparently it is very difficult.
Unfortunately, the docs also noticed a nodule of aspergillus on her kidney. It is pretty small (7mmx5mm) but the doctors won't be trying to remove it because of its location. Hopefully it resolves with the anti-fungal medications. Speaking of anti-fungals, it is really nice knowing that is is a fungal infection and only getting 2 IV medications per day instead of something like 15 when they had to cover all their bases.
We also got a new MRD measurement from Clara's bone marrow. It has actually dropped now to 0.04% from 0.21%. There are two potential reasons for this: 1) Total count of cells increases while leukemia stays idle or 2) immune response to the leukemia cells. Both are good scenarios and are likely taking place. Option 1 fits well because her counts are almost 5x what they were at the 0.21% marrow draw (though I don't know how the peripheral count matches the bone marrow count). Option 2 is in play more because of the aspergillus infection. Aspergillus is fought with a cell-mediated response which should also attack the leukemia cells. It is not going to kill them all, but may help counteract the delay in stem cell transplant.
So the new treatment plan is 4 weeks of antifungals before her re-workup for transplant. If the workup looks good the plan for transplant will be ~Jan 3. There will also be some light chemo before then to keep her marrow cell count low. Hopefully at the beginning of the year all of the infection will be gone and we won't get a flair up as soon as we knock out her immune system.
Wednesday, November 17, 2010
Back "home"
As of Monday morning we are back in our old room in 1 North (Oncology). Brooke and Clara didn't get kicked out of their neuro room (luckily) but Clara did decide to wake up for the day at 3am. Brooke has been having trouble sleeping as Clara is being very fussy. Something like this happened after her long stint in the PICU under sedation last time and we are wondering if this time is similar (she has had a ton of general anethesia). Tonight seemed to go better with Clara going to bed at 7 and sleeping fairly well. The sleep is still broken enough that I stayed until 1:30am to ensure that Brooke got some good continuous sleep.
We have confirmation that the infections both in her chest and in her brain are in fact fungal. They are still not sure which fungus but they say that it is growing in a manner consistent with aspergillus. As a next-gen sequencer type of guy I say they should just spend $200 and sequence the whole genome (ok, maybe they could just PCR up some ribosomal DNA) to figure out what the organism is. Why they have to do these biochemical assays that take so long is beyond me.
The MRI of her brain after surgery showed that everything looks great and that there are no remnants of the infection. I will have to get some copies of the MRIs to post on here. Next we will be tackling the infection in her chest with some aggressive procedures to speed her toward transplant (possibly removing a lobe of her lung).
We have confirmation that the infections both in her chest and in her brain are in fact fungal. They are still not sure which fungus but they say that it is growing in a manner consistent with aspergillus. As a next-gen sequencer type of guy I say they should just spend $200 and sequence the whole genome (ok, maybe they could just PCR up some ribosomal DNA) to figure out what the organism is. Why they have to do these biochemical assays that take so long is beyond me.
The MRI of her brain after surgery showed that everything looks great and that there are no remnants of the infection. I will have to get some copies of the MRIs to post on here. Next we will be tackling the infection in her chest with some aggressive procedures to speed her toward transplant (possibly removing a lobe of her lung).
Monday, November 15, 2010
Neuro Ward
We finally got to move out of the PICU and into the neuro ward (really just a general wing on the 3rd floor of the hospital) this afternoon. Clara was fussy all afternoon and we were looking forward to having a regular room where we could take care of her and let her and Brooke get some sleep. Alas, this part of the hospital uses double rooms so sleep wasn't going to happen. Our roommate was a 2 year old hispanic girl who would just randomly start screaming (and I mean SCREAMING) and begging for something to not happen. I'm not sure who thought that it would be a good idea to put double occupancy rooms in a children's hospital (where the rooms already have to be double occupancy to account for parents).
I was able to convince Clara to go to sleep around 5pm. She had been up since 2am the previous morning with only one small nap and was being a very grumpy girl. She had a similar episode (awake for 3 days with little sleep) after her second PICU visit and being sedated for a long period of time. She was obviously very tired and slept through the screaming in our room. Brooke tried to get sleep but couldn't manage any. We finally got the nurse to move us into an empty single room next door around 10pm.
This new room is like a suite. There is a giant floor to ceiling window overlooking a small balcony garden (no balcony) and more floor space than our oncology room. Unfortunately the room is an isolation room (since it is 1 person) and if a patient comes in who needs it we will be bumped. Because of that Brooke originally declined it, but after a bit more screaming I think that she accepted that some sleep would be better than no sleep. I left them at 12:30am with both Brooke and Clara sleeping soundly. Clara slept though 3 diaper changes, two vitals, and a myriad of beeping syringe pumps. Hopefully she will keep sleeping so that Brooke can get some rest, though I have a feeling that she will be up in a few hours.
We should be moving back to our home in 1 North (the oncology wing) tomorrow or the next day. We seem to be caught in a little bureaucratic or maybe territorial scenario where the neuro doctors want us in the "neuro" wing (where we never saw a neuro doc). Our old room is still open so if we are lucky we can just move back in to our old room tomorrow and be done with shuffling around the hospital.
I was able to convince Clara to go to sleep around 5pm. She had been up since 2am the previous morning with only one small nap and was being a very grumpy girl. She had a similar episode (awake for 3 days with little sleep) after her second PICU visit and being sedated for a long period of time. She was obviously very tired and slept through the screaming in our room. Brooke tried to get sleep but couldn't manage any. We finally got the nurse to move us into an empty single room next door around 10pm.
This new room is like a suite. There is a giant floor to ceiling window overlooking a small balcony garden (no balcony) and more floor space than our oncology room. Unfortunately the room is an isolation room (since it is 1 person) and if a patient comes in who needs it we will be bumped. Because of that Brooke originally declined it, but after a bit more screaming I think that she accepted that some sleep would be better than no sleep. I left them at 12:30am with both Brooke and Clara sleeping soundly. Clara slept though 3 diaper changes, two vitals, and a myriad of beeping syringe pumps. Hopefully she will keep sleeping so that Brooke can get some rest, though I have a feeling that she will be up in a few hours.
We should be moving back to our home in 1 North (the oncology wing) tomorrow or the next day. We seem to be caught in a little bureaucratic or maybe territorial scenario where the neuro doctors want us in the "neuro" wing (where we never saw a neuro doc). Our old room is still open so if we are lucky we can just move back in to our old room tomorrow and be done with shuffling around the hospital.
Saturday, November 13, 2010
MRI looks good
So she came out of her MRI about half an hour later than we expected. I didn't make a post earlier because we have been waiting to hear the results.
While we haven't seen the Drs. We hear the scan looked good and her vitals have been really stable even since yesterday. She has been cleared to leave the PICU but there aren't any beds in the "neuro" unit. (I used quotations because I now hear that there really isn't such a thing. That's just where neuro patients tend to go for recovery. Kinda finding it silly since she HAS a room available downstairs and IS stable. But for now, we are just hanging out in the PICU.
We got her out of bed for a little bit after she threw up (nausea is expected after general anesthesia which she got again today for her MRI). She completely perked up and was quick active in small spurts. Take a look! I wish you could see the intensity as she attacked my water bottle.
While we haven't seen the Drs. We hear the scan looked good and her vitals have been really stable even since yesterday. She has been cleared to leave the PICU but there aren't any beds in the "neuro" unit. (I used quotations because I now hear that there really isn't such a thing. That's just where neuro patients tend to go for recovery. Kinda finding it silly since she HAS a room available downstairs and IS stable. But for now, we are just hanging out in the PICU.
We got her out of bed for a little bit after she threw up (nausea is expected after general anesthesia which she got again today for her MRI). She completely perked up and was quick active in small spurts. Take a look! I wish you could see the intensity as she attacked my water bottle.
Doing well
Clara did well overnight and Is recovering quickly as far as we can tell. She is in MRI now for 2 hours to confirm there is no post-op swelling or bleeding in the brain.
Friday, November 12, 2010
Doctor report is in
We just met with the neurosurgen who did Clara's surgery. He says that she is ok and responded fine after waking up from the anesthesia. He also said that the surgery was harder than expected. She had a veineous lake in the lining of her brain that bleed bad requiring a transfusion. Her brain also started swelling whih they had to manage (apparently happens more in babies). He thinks everything should be fine and that he got all of the abscess. He also said that he took a little extra just to be sure. Testing indicated that it was not a cancer so they are still thinking fungus. She also had some lung discharge that they are a little worried about. They will monitor her in the PICU overnight and do another MRI in the morning to make sure that they got it all.
We can go see her in about an hour.
We can go see her in about an hour.
Waiting
We apparently beat them. She is still not in recovery so we should be able to talk to the Dr as soon as he gets washed up.
Coming out of surgery
She is coming out of the OR and headed to the Recovery area. Haven't talked to the Dr yet. We may miss him as we hurry to the hospital from the house, (just got back from car shopping) but he said he'd see us soon even so. He is a really nice guy too. Not like my former neurosurgeon experiences with my migraine history.
Surgery Update: 1st hour
Surgery is going well. She is stable and has not needed red blood cells but the are continuing to give her platelets. A frozen sample of the abscess has been sent for STAT results to see what it is. Should have results in an hour. They are expecting it to be at least 2-2 1/2 more hours.
It has begun...
We made it in time to greet Clara this morning before surgery. Apparently, she has been awake since about 2am (which is part of why I didn't stay last night). She got two "doses" of platelets to get her platelet count above 100...she is at 250...for surgery. And despite getting "pre-medicated" with benedryl with each platelet dose, she was an awake girl! It was great to get to play with her for about half an hour before they called us to the pre-op holding room at 6:30am.
She has a great anesthesiologist today. He is the same Dr. that came in on Sunday to do her MRI.
She will be in the MRI for two hours as the "map" her brain so that during surgery they can visually see where they are with a microscope PLUS the combo of these little stickers on her head with the pre-surgery MRI images they will be able to EXACTLY know where they are in her brain as they move their instruments around in her head. They refer to it as GPS of her abscess and the instruments.
The waiting room attendant has gotten to know us and Clara and is going to give us a call personally as she gets updates from the OR nurse during Clara's procedures.
We are headed to pick out a car so that when Clara is all done with these surgeries and then all done with her transplant, Mommy can get her to and from the house and the hospital for her 3-4x/week appointments.
Need to run! They are now estimating that they could be done around noon instead of 3. Not sure which story to believe...last night's or this morning's.
Will keep you posted!
She has a great anesthesiologist today. He is the same Dr. that came in on Sunday to do her MRI.
She will be in the MRI for two hours as the "map" her brain so that during surgery they can visually see where they are with a microscope PLUS the combo of these little stickers on her head with the pre-surgery MRI images they will be able to EXACTLY know where they are in her brain as they move their instruments around in her head. They refer to it as GPS of her abscess and the instruments.
The waiting room attendant has gotten to know us and Clara and is going to give us a call personally as she gets updates from the OR nurse during Clara's procedures.
We are headed to pick out a car so that when Clara is all done with these surgeries and then all done with her transplant, Mommy can get her to and from the house and the hospital for her 3-4x/week appointments.
Need to run! They are now estimating that they could be done around noon instead of 3. Not sure which story to believe...last night's or this morning's.
Will keep you posted!
Thursday, November 11, 2010
Pneumonia, Aspergillus, Brain Surgery...OH MY!
Sorry for the delay in putting up another blog post. A lot has happened in the last week or so that we need up update you all about.
Stem cell meeting came with great news, scary risks and much anticipation. Clara's donor is perfect in EVERY criteria about which they know to be selective. Incredible. We were scheduled to start the preparative chemotherapy either November 15th or November 29th depending on the donor's availability. Clara was actually being rushed through all of her tests in anticipation of a 15th start date. We were also told that if everything went well we could go home in 5-6 weeks after the transplant and do the rest of her medical work as an outpatient coming in 3-4 times per week. This news really helped us to see a light at the end of the tunnel.
Then on Wednesday night Clara started spiking fevers every 12 hours for the next three days. The doctors weren't sure why she was spiking fevers other than obviously an infection somewhere. She was also the happiest that she's been in over a month which was adding to the confusion.
Finally on Saturday the doctors decided to take a look at her chest to see if she had an infection there. Since it was the weekend, we "couldn't" get a CAT scan done. So, they took a chest x-ray. They discovered a pneumonia in her right lung. She wasn't showing any other symptoms of the pneumonia - no coughing, trouble breathing, and her lungs sounded perfectly clear. At this point, Infectious Disease (ID) became involved but wouldn't advise further than increasing her antibiotic and antifungal medicines until they had a CT scan. We pushed hard to have a CT done over the weekend so that they could get a better idea as to what the abscess in her lung was: bacterial, viral, or fungal. Somehow the resident managed to get this done on Sunday (which we understood was virtually unheard of) but the results didn't give a better idea of what it was. However, the CT did give us one more problem - they saw another abscess, this time in her brain.
To get a better idea of what the mass in her head was, they did an MRI on Monday. They hypothesized that it could be an old bleed, an infection from the same organism as the pneumonia, a combo of the two, or perhaps a solid mass of leukemia. Additionally, they took an aspirate and sample from the pneumonia in her lung. Unfortunately, the sample didn't provide conclusive evidence as to what the infection was. This is probably because they thought that the mass was mostly liquid but in the surgery found that it was actually organized and not as liquid. They left a chest tube in to drain the abscess but hardly any fluid came out. Clara was in a lot of pain from the chest procedure so she was pretty doped up all day.
On Wednesday we had the chest tube removed along with taking a better sample from her lung. During that surgery we also got another sample of her bone marrow to measure the current MRD level.
The doctors still do not know what the infection is for sure. They are leaning toward Aspergillus (a fungus). With this hypothesis they are hitting her hard with anti-fungal medication but also keeping up her levels of antibiotics just in case.
Tomorrow morning (starting at 6:30am) Clara will start procedures to have the abscess removed from her brain. The procedure begins with a 2 hour MRI where they map in high resolution 3-d her brain in reference to markers on her skin (stickers) and then use this as GPS during the surgery where they can see MRI images of the region they are working on. The surgery then take 3-4 hours, though they say it could take as long as 6 because they will be taking their time. The abscess is on the surface near the back of her head so should be relatively easy to remove.
After the surgery she will be in the PICU for a few days to recover and be monitored closely and then a few more days in the Neurology Unit to watch her carefully. Because she is gone for a few days we have to move all of our stuff home out of the oncology unit. We will probably be moving back into a different room in a week or so.
And last, but not least, we found out today that they will probably remove the lobe of her lung that is infected so that they can move her to stem cell transplant as quickly as possible. The Infectious Disease group says they can kill it in 6 weeks or so, but the Oncology group considers the transplant urgent. The idea would be to remove as much of the infection as possible and then let the anti-fungals work for the next 4 weeks along with her immune system (her neutrophils are up to 1500 now). After that they would probably risk the stem cell transplant if things are working well.
Friday, October 29, 2010
New MRD Results
Today we got the results of Clara's MRD from the round two of chemotherapy. If you remember, this is a measure of the amount of leukemic cells versus non-leukemic cells in her bone marrow. An ideal number is 0% (or as they can measure it would be < 0.01%). After the previous round of chemo we were had bad news about MRD (as it being low is one of the best prognostic indicators).
Her results today are pretty good: 0.21% MRD. This is not remission and not the optimal scenario for stem cell transplant. However, we will be moving forward to transplant within the next few weeks without another round of induction chemo.
Disturbingly, we also discovered that the original MRD measurement which we though was 12% was actually a mistake on the part of our attending and it should have been 0.12%. This error came up with a new reporting method that they are using (it sounds as if they get a spreadsheet back and the new report provides a % while the older method did not. The attendings inappropriately assumed that they had to shift two decimal places (ignoring the % that was already there). Luckily the value difference wouldn't have changed the treatment.
As I said these results have the doctors wanting to start transplant as soon as possible. We have two matched donors now and will be transplanting based on their availability. We also have to wait for Clara's white cell counts to recover a bit before the preparatory chemotherapy because that significantly reduces the risk of infection during the time where she has no immune system. We are looking at probably 2-3 weeks until transplant.
Her results today are pretty good: 0.21% MRD. This is not remission and not the optimal scenario for stem cell transplant. However, we will be moving forward to transplant within the next few weeks without another round of induction chemo.
Disturbingly, we also discovered that the original MRD measurement which we though was 12% was actually a mistake on the part of our attending and it should have been 0.12%. This error came up with a new reporting method that they are using (it sounds as if they get a spreadsheet back and the new report provides a % while the older method did not. The attendings inappropriately assumed that they had to shift two decimal places (ignoring the % that was already there). Luckily the value difference wouldn't have changed the treatment.
As I said these results have the doctors wanting to start transplant as soon as possible. We have two matched donors now and will be transplanting based on their availability. We also have to wait for Clara's white cell counts to recover a bit before the preparatory chemotherapy because that significantly reduces the risk of infection during the time where she has no immune system. We are looking at probably 2-3 weeks until transplant.
Wednesday, October 27, 2010
Mimi's Visit
I haven't had a chance to talk about my mother's visits much on the blog. I have taken for granted that she knows how much it meant to me to have her here and for Clara to get to spend some time with her. It is difficult to thank someone for such a gift as what she has given to me. I'm not always so great with words and, in this situation, I have less time to sculpt what I want to say.
To my mother, I want to say thank you.
My mother is quite eloquent with her words and posted on her blog the most beautiful and difficult descriptions of what she witnessed while she was here this month. I'd like to share it with all of you.
To my mother, I want to say thank you.
My mother is quite eloquent with her words and posted on her blog the most beautiful and difficult descriptions of what she witnessed while she was here this month. I'd like to share it with all of you.
Great News from Stem Cell Team today!
10 of 11 donors requested from the National Marrow Donor Registry agreed to have their blood tested further to confirm a typing match. The first 2 are in and are perfect 10/10 matches! They are also a match for other important criteria that normally people don't get to be picky about. We are still bringing in the other 8 for back ups should a donor not be physically stable enough to donate or the timing of the donation doesn't work with their personal schedule, etc.
Now we just need her to be in remission from this last round of chemo and we can head to transplant!!!
The fastest we would be in the Transplant Unit is 3 weeks...that's assuming we get Clara's marrow results back tomorrow and she is in remission - which we don't expect. But, we'll keep you posted!
Now we just need her to be in remission from this last round of chemo and we can head to transplant!!!
The fastest we would be in the Transplant Unit is 3 weeks...that's assuming we get Clara's marrow results back tomorrow and she is in remission - which we don't expect. But, we'll keep you posted!
Aspirate and Biopsy Done
The procedure went well. Apparently they went in through one of the 5 sites from last week. I'm not sure if that will make her more or less uncomfortable. Regardless, I am keeping her medicated today. She has been sleeping since the procedure, and I hope will continue to sleep through the night. We will see.
Both Dr. Lakayo and Dr. Dahl were with her for the procedure - I wasn't expecting that. They said there was more marrow than last week but they are still not expecting it to be enough. Dr. Lakayo apologized for putting her through this but that we want to know as soon as possible and that we want to keep pushing the stem cell team to move as fast as possible. Supposedly they are moving very fast, but we want to give them every reason to continue to do so.
Her counts are still stagnant; so, who knows if they will be up next week. I don't think they even have her tentatively booked for another procedure at this point.
Right now, we are waiting to hear the aspirate and biopsy results, plus the results from the 3 donor specimens, plus whether or not Alan or I are a mismatch to her HLA type. I hope we will get the results for all of these things by the end of the week but wouldn't be surprised if it takes until Monday at the earliest.
Both Dr. Lakayo and Dr. Dahl were with her for the procedure - I wasn't expecting that. They said there was more marrow than last week but they are still not expecting it to be enough. Dr. Lakayo apologized for putting her through this but that we want to know as soon as possible and that we want to keep pushing the stem cell team to move as fast as possible. Supposedly they are moving very fast, but we want to give them every reason to continue to do so.
Her counts are still stagnant; so, who knows if they will be up next week. I don't think they even have her tentatively booked for another procedure at this point.
Right now, we are waiting to hear the aspirate and biopsy results, plus the results from the 3 donor specimens, plus whether or not Alan or I are a mismatch to her HLA type. I hope we will get the results for all of these things by the end of the week but wouldn't be surprised if it takes until Monday at the earliest.
Discomfort Last Night
Last night was much harder than I anticipated. Clara woke up at midnight and 3:30am and was acting similar to two nights ago where she was just really agitated...not just fussy. There was something obviously wrong but I didn't really know what. Her 3:30am waking was after crying in her sleep and then waking herself up with her outcry.
It turns out her temperature is up (which is what happened two nights ago). It isn't quite a fever - but it still has me worried.
It turns out her temperature is up (which is what happened two nights ago). It isn't quite a fever - but it still has me worried.
Tuesday, October 26, 2010
PICTURES!
Just cause you like to see them and I like to show her off!
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| My current favorite picture with Clara sleeping next to her prayer pillow. A gift from a friend of a friend of my mom's. |
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| Simply ridiculously cute in her brand new bumbo. |
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| Since this picture was taken, she's learned how to consistently knock the toy OFF the tray. Mommy says, "uh oh!" and puts it back on the tray and says "there it is!" Can't believe she is learning cause and effect already! |
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| Too much fun and she is asleep with her toys again! |
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| Snuggles with Mimi in the hospital atrium. |
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| An unfortunate picture of the side of my face but a gorgeous one of my daughter. She has had a few nights where she needed to be near me to sleep well. This is a perfect example of how she likes to have her hand on my face while she sleeps. |
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| She LOVES the lady bugs on one of her new dresses from her Grandma. They are both fun to look at and eat! |
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| See loves those toes! |
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| Teehee! |
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| Today, she decided her new favorite sleeping position is with her hand over her eyes. I'd probably learn how to block the light from the door too! All those silly nurse visits! |
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| One of the nurses gave Clara this mobile. Absolutely fabulous! By Tiny Love. |
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| The BEST picture from Mimi's visit! |
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| Clara shopping for PICC appropriate clothing now that she is in Size 6 month clothing! |
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| Clara showing obvious comfort. She was overstuffed from her overnight feeds and I moved her to my pillow to stretch out her belly. She was much more comfortable after about an hour of laying there. Only problem was that she threw up 20 minutes later after I gave her some of her meds. |
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| This girl has got some fine motor skills! |
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| Tired, but...tada! |
Bone Marrow
So one thing we haven't posted an update about is Clara's bone marrow and whether or not we are headed to transplant yet.
Last Tuesday, Clara had a bone marrow aspirate and biopsy. It took until yesterday for them to tell us that the marrow sample from last week's procedure wasn't sufficient to determine her MRD (minimal residual disease). As such, they tentatively rescheduled her for another aspirate and biopsy for tomorrow (Wednesday) assuming her white blood cell counts had recovered enough that they would expect enough bone marrow to be able to get a good sample.
This morning, they let us know that while Clara's counts HAVE NOT recovered, Dr. Dahl (the head AML dude at Packard) wants to take a look anyway. While we hate to have her undergo another procedure (general anesthesia is always a dangerous things, plus last week they had to attempt a biopsy in two places on one hip and three on the other...she was so bruised and is still healing), we also want to know as soooooon as possible, if there are leukemic cells in her marrow.
Alan and I were finally tested today to see if we can undergo a Natural Killer Cells (NKC) procedure at St. Jude Children's Hospital. IF Clara is not in remission after this last round of chemo, NKC is another treatment that they are trying instead of chemo once we are at this stage of treatment. I don't completely understand the process, so you would have to bug Alan for a blog post on that one. But, basically, if Alan or I are a MISmatch in our HLA typing, our cells could be a treatment plan for her instead of chemo and before bone marrow transplant.
The goal is for her to be in complete remission (or as close to it as possible) before we go to bone marrow transplant.
We did hear from the stem cell transplant team that they have (3?) specimens from potential donors that have arrived at Stanford. We will have to wait 3-4 days to find out if they are a perfect 10 of 10 match like we anticipate. Nothing but perfect for our Clara Bug!
So! Keep the thoughts and prayers coming! Clara's procedure is at 7:30am PST. We had a PERFECT night's sleep last night and I am anticipating the same tonight. A concoction of benadryl and dilaudid are ensuring that.
Thanks to all for your continued support.
Last Tuesday, Clara had a bone marrow aspirate and biopsy. It took until yesterday for them to tell us that the marrow sample from last week's procedure wasn't sufficient to determine her MRD (minimal residual disease). As such, they tentatively rescheduled her for another aspirate and biopsy for tomorrow (Wednesday) assuming her white blood cell counts had recovered enough that they would expect enough bone marrow to be able to get a good sample.
This morning, they let us know that while Clara's counts HAVE NOT recovered, Dr. Dahl (the head AML dude at Packard) wants to take a look anyway. While we hate to have her undergo another procedure (general anesthesia is always a dangerous things, plus last week they had to attempt a biopsy in two places on one hip and three on the other...she was so bruised and is still healing), we also want to know as soooooon as possible, if there are leukemic cells in her marrow.
Alan and I were finally tested today to see if we can undergo a Natural Killer Cells (NKC) procedure at St. Jude Children's Hospital. IF Clara is not in remission after this last round of chemo, NKC is another treatment that they are trying instead of chemo once we are at this stage of treatment. I don't completely understand the process, so you would have to bug Alan for a blog post on that one. But, basically, if Alan or I are a MISmatch in our HLA typing, our cells could be a treatment plan for her instead of chemo and before bone marrow transplant.
The goal is for her to be in complete remission (or as close to it as possible) before we go to bone marrow transplant.
We did hear from the stem cell transplant team that they have (3?) specimens from potential donors that have arrived at Stanford. We will have to wait 3-4 days to find out if they are a perfect 10 of 10 match like we anticipate. Nothing but perfect for our Clara Bug!
So! Keep the thoughts and prayers coming! Clara's procedure is at 7:30am PST. We had a PERFECT night's sleep last night and I am anticipating the same tonight. A concoction of benadryl and dilaudid are ensuring that.
Thanks to all for your continued support.
Monday, October 25, 2010
Fussy
While yesterday was a fabulous day for me because of the support of my husband, the past five days have not been ideal for Clara. She has had wonderful periods of play and she is continuing to prove herself to be a tough (handles pain like a champ and does her best to self soothe instead of crying fitfully) and gentle (loves smiles, kisses, indulging the staff with her undivided attention when they talk to her, good-natured, and easy to please) little girl. What is frustrating is that she has been particularly fussy - which is just so unlike her. She isn't a complainer and is always easily distracted.
She had a horrible night last night, only able to fall asleep in my arms, at the breast or in bed with me. I finally had to call Alan at 6am to relieve me as I had only gotten about 2-4 hours of not so good sleep. I couldn't have made it today without his help and don't have words for how to thank him. He was our "watch dog" this morning as the nurse shift change took place. Clara and I kept sleeping while he answered any questions they had or acknowledged whatever they felt like they needed to communicate until she and I both woke up at around 11.
She threw up her NG tube 45 minutes later - which explained the extreme discomfort she seemed to be having in her bloated belly. She got to be free of the NG for about 5 hours before they had to put it back in for the night. Our nurse today, Heather, asked if I'd like to pre-medicate Clara before the process of stuffing a tube up her nose and down her throat. (She didn't quite phrase it that way.) I had never been asked that before, and only today realized how helpful that might be before putting her through such trauma. We gave her Benadryl (since she was probably feeling some tummy discomfort today anyway and since she had not had a good nap all day, it would make her drowsy). It was the FIRST time in 5 days that Clara has not fussed when put into bed.
She slept soundly while Alan and I went to get pizza at our favorite local place - Applewood Pizza - and didn't wake until the moment we walked back into the unit 2 hours later. We had discussed at dinner that she may still be having some pain and that if she still seemed fussy tonight, we would give her some dilaudid. Lo and behold, she was fussy and dilaudid worked. She is now soundly sleeping and there are no anticipated entrances into the room until 2:30am when the nurse will have to refill Clara's feed bag.
Here's to a good night's sleep for all of us.
She had a horrible night last night, only able to fall asleep in my arms, at the breast or in bed with me. I finally had to call Alan at 6am to relieve me as I had only gotten about 2-4 hours of not so good sleep. I couldn't have made it today without his help and don't have words for how to thank him. He was our "watch dog" this morning as the nurse shift change took place. Clara and I kept sleeping while he answered any questions they had or acknowledged whatever they felt like they needed to communicate until she and I both woke up at around 11.
She threw up her NG tube 45 minutes later - which explained the extreme discomfort she seemed to be having in her bloated belly. She got to be free of the NG for about 5 hours before they had to put it back in for the night. Our nurse today, Heather, asked if I'd like to pre-medicate Clara before the process of stuffing a tube up her nose and down her throat. (She didn't quite phrase it that way.) I had never been asked that before, and only today realized how helpful that might be before putting her through such trauma. We gave her Benadryl (since she was probably feeling some tummy discomfort today anyway and since she had not had a good nap all day, it would make her drowsy). It was the FIRST time in 5 days that Clara has not fussed when put into bed.
She slept soundly while Alan and I went to get pizza at our favorite local place - Applewood Pizza - and didn't wake until the moment we walked back into the unit 2 hours later. We had discussed at dinner that she may still be having some pain and that if she still seemed fussy tonight, we would give her some dilaudid. Lo and behold, she was fussy and dilaudid worked. She is now soundly sleeping and there are no anticipated entrances into the room until 2:30am when the nurse will have to refill Clara's feed bag.
Here's to a good night's sleep for all of us.
Sunday, October 24, 2010
A Fabulous Day!
We have just had what I would call an incredible day!
Since it has been such a long time since my last update and I am always long winded anyway, I thought I'd post a series of shorter posts chronicled by topic and use this post as a bulleted version of the important stuff and a link source to the more detailed post.
Since it has been such a long time since my last update and I am always long winded anyway, I thought I'd post a series of shorter posts chronicled by topic and use this post as a bulleted version of the important stuff and a link source to the more detailed post.
Simple Pleasures
It is amazing what new things become very important simple pleasures of life when you become a mother. As a mother of a hospitalized child, one such pleasure has become more infrequent and so much more treasured:
a shower.
Today, I got a shower. And my husband brought me my other daily guilty pleasure: a cup of coffee. Normally, it is drip coffee brewed in the patient kitchen at the hospital or brought to me on my morning breakfast tray from the hospital. Today, it was a white chocolate mocha from Starbucks accompanied by an old-fashioned donut and a kiss from my husband...and clean laundry. Such a wonderful start to my day.
a shower.
Today, I got a shower. And my husband brought me my other daily guilty pleasure: a cup of coffee. Normally, it is drip coffee brewed in the patient kitchen at the hospital or brought to me on my morning breakfast tray from the hospital. Today, it was a white chocolate mocha from Starbucks accompanied by an old-fashioned donut and a kiss from my husband...and clean laundry. Such a wonderful start to my day.
Solid Foods
Before Clara got sick, my biggest worry (as noted in my last blog post prior to her diagnosis) was having to introduce solids. It was a sign that my "newborn" - become "infant" - become "baby" was growing up. I wouldn't have even claimed that breastfeeding is the most wonderful thing in the world - although it is now something I cherish. I just didn't want her to grow up and move past the breastfeeding stage. Plus, breastfeeding is free, and virtually mess free since Clara wasn't a spitter upper.
Now, here we are. She is 6 months old and I can't hold out any longer. The bigger problem? I can hardly get her to eat at the breast, she has a tube stuck in her nose to force feed her, and I am supposed to be introducing solids!?!? I can't even find the time to play with her most days because she is either nauseous or tired or attached to her IV (which makes it hard to have tummy time or encourage her to sit up or roll over around this IV line).
Fortunately, she is continuing to advance developmentally - particularly with her fine motor skills. When she pulled off the breast the other day and tried to instead grab my nipple and put it in her mouth, I knew she was more than ready to start solids.
So that is one of our new daily dilemmas - is she in a good enough mood and feeling up to "playing"? AND should we spend this one lone period working on gross motor skills or solid foods?
We tend to alternate days. One day it is rice cereal and the next it is playtime. Since today was focused on family fun, we will do solids tomorrow!
Now, here we are. She is 6 months old and I can't hold out any longer. The bigger problem? I can hardly get her to eat at the breast, she has a tube stuck in her nose to force feed her, and I am supposed to be introducing solids!?!? I can't even find the time to play with her most days because she is either nauseous or tired or attached to her IV (which makes it hard to have tummy time or encourage her to sit up or roll over around this IV line).
Fortunately, she is continuing to advance developmentally - particularly with her fine motor skills. When she pulled off the breast the other day and tried to instead grab my nipple and put it in her mouth, I knew she was more than ready to start solids.
So that is one of our new daily dilemmas - is she in a good enough mood and feeling up to "playing"? AND should we spend this one lone period working on gross motor skills or solid foods?
We tend to alternate days. One day it is rice cereal and the next it is playtime. Since today was focused on family fun, we will do solids tomorrow!
Clara Gained Weight!
The biggest news is that Clara has gained weight! She is now 6.314 kg = 13 lbs and 14.5 oz!
And for once, it doesn't seem to be fluid overload of her tissues. Granted, her weight can greatly fluctuate dependent upon whether or not she has just had one of her massive pees or poops or has one yet to come, but this is the most she has weighed since her admittance.
To give you an understanding of the significance: Clara's weight has fluctuated right around 6 kg which was roughly 50th percentile when she was admitted at 4 months old. But now that she is 6 months old, 6 kg puts her in the 0th(!) percentile. Her appetite has fluctuated severely over the course of our being here and after her PICU visit and this last round of chemo she had to re-learn how to breastfeed. Even when she seems like she is eating really well, it only lasts for a day or two - and still isn't close to the number of ounces she is supposed to have in a day. Even more important, she needs even more calories than a well baby to be able to repair her body from the chemo.
So this was HUGE news of success after two months of feeding her at the breast, through her NG tube, continuous feeds from a pump through her NG tube at night, AND having introduced solids last week (which are unfortunately not enough to count as caloric intake yet) all in an effort to help her gain weight.
WE (and she) DID IT!
And for once, it doesn't seem to be fluid overload of her tissues. Granted, her weight can greatly fluctuate dependent upon whether or not she has just had one of her massive pees or poops or has one yet to come, but this is the most she has weighed since her admittance.
To give you an understanding of the significance: Clara's weight has fluctuated right around 6 kg which was roughly 50th percentile when she was admitted at 4 months old. But now that she is 6 months old, 6 kg puts her in the 0th(!) percentile. Her appetite has fluctuated severely over the course of our being here and after her PICU visit and this last round of chemo she had to re-learn how to breastfeed. Even when she seems like she is eating really well, it only lasts for a day or two - and still isn't close to the number of ounces she is supposed to have in a day. Even more important, she needs even more calories than a well baby to be able to repair her body from the chemo.
So this was HUGE news of success after two months of feeding her at the breast, through her NG tube, continuous feeds from a pump through her NG tube at night, AND having introduced solids last week (which are unfortunately not enough to count as caloric intake yet) all in an effort to help her gain weight.
WE (and she) DID IT!
Sunday, October 17, 2010
$1,154,192.76
Wow, folks! I just checked our insurance portal and we just passed the million dollar mark. I thought that this would be a good time to post how thankful we are to have such a good insurance policy (and I know some were concerned about the cost). As long as everything goes as we think that it is going to go, we will only owe $250 at the end of this. I feel for those in similar situations having to figure out how to deal with the financial burden on top of the already emotionally tiring situation.
Friday, October 15, 2010
On the eating front
Clara has been having some trouble with her eating. She has been mostly on an NG tube and was getting scheduled feeds of Brooke's milk. Unfortunately though Brooke's frozen supply ran short this week and the doctors wanted to add formula into the mix to help her get the calories that she needs. The big concern is that Clara has to burn a lot of calories just dealing with the effects of the chemo, not to mention her caloric need to sustain regular growth.
So the night that they started the formula, she was already a little swollen again (this is what sent us to the PICU last time). She continued to get more fluid overloaded that night and the next day she looked particularly hefty. Of course, we didn't want to keep feeding her because she looked like her stomach was going to pop. She seemed really uncomfortable and was laying down with her belly arched out all day. Until finally she peed. She peed ~120grams in about 10 minutes. That is 2% of her body weight, which for your typical 150lb person is 3lbs of pee (this is really an unrealistic extrapolation).
Right around this time they decided to take out her NG and see if she could continue to gain weight without the forced feeds. Of course, she lost some weight from the fluid overload and also lost some weight because she needed to remember how to breast feed. She also was about 12 hours late yesterday for her red blood cell transfusion so she ended up sleeping all day without eating. All in all she lost about .1kg over 2 days so the doctors want to put her back on the NG tonight. Brooke is upset over this (even though she knows it is necessary) because feeding is one of the few things that she and Clara have control over.
Finally on the feeding story, Clara is ready to start solid foods. Her throat and mouth are mostly recovered from the last round of chemo so swallowing should be less painful now. We were hoping to do it without the NG tube, but will have to deal with that discomfort still. Hopefully we will have a post soon with her first attempt.
And finally, a picture from right now as I type this out in the atrium of the hospital! Brooke and Debbie (Brooke's mom) are looking at the camera, but Clara is smiling at her daddy!
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