I arrived back at the hospital this morning to a zonked daughter and husband--the night had been a repeat of the night before.
At about 3am-ish, Jeff awoke to a team of people huddled around Zoe trying to assess her labored breathing. Many of the same things happened as the night before: the PICU attending was called in and the respiratory therapy team was summoned. She was suctioned and nebulized with epinephrine, and that seemed to calm everything right down. But not without a lot of drama first.
Her platelets did not boost. They dropped from 7 to 5 this morning (a normal person has arround 150, they would like her to have at least 50). They started her on aminocaproic acid to help her blood to clot in the absence of enough platelets. The fact that she still has a blood clot in her left leg makes the use of the aminocaproic acid a bit risky in that it could increase the size of the clot.
Everything is a tenuous balance in this process.
Despite all that, Manley did say he thinks Zoe is perhaps turning a corner for the better. Her WBC's showed a little blip from 0 to .2, and then back down again. But it's a sign that something is starting to happen towards engraftment.
Her rash is getting better (yay steroids!), but her petechiae is getting worse (boo platelet deficiency!). She got HLA matched platelets last night, but no boost--as I mentioned before. Manley said that a donor was going in today to get apherised for more platelets for Zoe, and that those would be ready tomorrow.
He said that one possible reason the platelet level doesn't boost for her is that her massive spleen is gobbling them all up. Spleens hoard blood, and very large spleens hoard A LOT of blood. Hers is massive, even larger than it was when we checked in. I may have mentioned it before, but osteopetrotic babies' spleens grow very large to compensate for the diminished capacity of the bone marrow to produce and store blood.
On a random topic, a friend wrote me with a very good question: why didn't they just give Zoe Tylenol through anal suppositories when her fever was raging and she was unable to take it by mouth? I asked the nurse that tonight, and the answer was just as good: with mucositis her entire GI tract is torn up and compromised--from mouth all the way to anus. Suppositories have the potential to damage the tissue, thereby opening it up to fecal matter and drastically raising the risk of infection. Also, with her low platelet count, they don't want to do anything that could cause her to bleed.
Well, off to bed. Hopefully this night is a better one for the little squirt. Such a remarkable baby, she is!
Saturday, January 31, 2009
Friday, January 30, 2009
Day +9: "Complications are Expected"
I find I have to repeat that to myself: "Complications are expected," as they told us prior to when this entire BMT process began. It's a series of fires to be put out, and man, is it an extinguisher dance!
Last night was my night to stay in the hospital, and just as Jeff had experienced, I awoke at 3AM to a group of people huddled around Zoe's bed trying to determine whether she needed to go back to the PICU. Her breathing was labored, her temperature climbing, her CO2 gas levels too high, and her blood pressure was registering a wider spread between the systolic and diastolic numbers than they like to see.
Even so, the respiratory therapists who had tended to her the night before seemed to think she sounded better on the whole than the previous night. Her heart rate was better, her breathing rate was less rapid, and she didn't sound as "junky" in her air ways. They decided to confer with the PICU attending before sending her up there. I fell asleep while waiting to hear. I awoke a few hours later in the same room, next to a baby that sounded better, no longer febrile, and her blood pressure was normal again. Phew!
What had changed for the not-so-great was the fact that, on top of her still dramatic GVH rash, she now had petechiae all over her body. Petechiae shows up for different reasons, but definitely when one's platelets are extremely low. They are mini spots of hemorrhage in the skin.
I can't remember if I explained this before, but platelets are the "ingredient" in the blood that causes the blood to clot--a very important function. As Zoe's bone marrow is severely compromised, she no longer makes her own blood, and consequently does not produce platelets.
She's been receiving blood and platelet transfusions regularly since the whole process began, but recently, lab analyses have shown that the last several platelet infusions have not given her any platelet boost at all. They want her at 5o; she's currently at 7, and dropping.
When platelet boosting doesn't happen after a transfusion, they assume that the body and the product are rejecting each other (or, this is what I understood them to say, but in my sleep deprived state, can't be certain). They did an HLA typing to see if they could come up with a specific match for her.
Luckily, they found one pretty quickly. She will be receiving those platelets tonight, and hopefully they will do the job and stick!
-----------------------------------------------------------
So, a side plug here: Please consider donating platelets--heck just donate blood if donating platelets seems too much. There is a shortage of platelets, and we are learning just how life saving they are for people--such as Zoe--who need them. Do not go to the places that pay you for your blood products. By law, products obtained that way can only be used for research. Donated blood products are used in medical situations.
-------------------------------------------------------------------
They have upped Zoe's steroid dosing to attack the rash more aggressively.
The way Manley explained it (but really, how I remember it--I guess I'm saying don't take my blog for being absolutely accurate medical fact), the donor T-cells are the ones who are attacking Zoe's skin right now. They do remove some of the T-cells from the donor stem cells to limit this sort of thing, but they can't remove them all as they help the stem cells engraft. Too many T-cells removed and the graft fails; too many T-cells left in, and they have a rampage party.
Manley said that the way Zoe's rash is progressing is classic and expected. He pointed out the signs that the steroid is doing its work, and he's really pleased that her fever is down. I think I was fooling myself about her mouth looking better, because it was looking like hamburger today.
Starting now we are wondering if the next morning lab results will show some spiking of her neutrophils and WBC's: the first signs of engraftment.
For now I will take a lab report that shows a spiking of her platelets.
Last night was my night to stay in the hospital, and just as Jeff had experienced, I awoke at 3AM to a group of people huddled around Zoe's bed trying to determine whether she needed to go back to the PICU. Her breathing was labored, her temperature climbing, her CO2 gas levels too high, and her blood pressure was registering a wider spread between the systolic and diastolic numbers than they like to see.
Even so, the respiratory therapists who had tended to her the night before seemed to think she sounded better on the whole than the previous night. Her heart rate was better, her breathing rate was less rapid, and she didn't sound as "junky" in her air ways. They decided to confer with the PICU attending before sending her up there. I fell asleep while waiting to hear. I awoke a few hours later in the same room, next to a baby that sounded better, no longer febrile, and her blood pressure was normal again. Phew!
What had changed for the not-so-great was the fact that, on top of her still dramatic GVH rash, she now had petechiae all over her body. Petechiae shows up for different reasons, but definitely when one's platelets are extremely low. They are mini spots of hemorrhage in the skin.
I can't remember if I explained this before, but platelets are the "ingredient" in the blood that causes the blood to clot--a very important function. As Zoe's bone marrow is severely compromised, she no longer makes her own blood, and consequently does not produce platelets.
She's been receiving blood and platelet transfusions regularly since the whole process began, but recently, lab analyses have shown that the last several platelet infusions have not given her any platelet boost at all. They want her at 5o; she's currently at 7, and dropping.
When platelet boosting doesn't happen after a transfusion, they assume that the body and the product are rejecting each other (or, this is what I understood them to say, but in my sleep deprived state, can't be certain). They did an HLA typing to see if they could come up with a specific match for her.
Luckily, they found one pretty quickly. She will be receiving those platelets tonight, and hopefully they will do the job and stick!
-----------------------------------------------------------
So, a side plug here: Please consider donating platelets--heck just donate blood if donating platelets seems too much. There is a shortage of platelets, and we are learning just how life saving they are for people--such as Zoe--who need them. Do not go to the places that pay you for your blood products. By law, products obtained that way can only be used for research. Donated blood products are used in medical situations.
-------------------------------------------------------------------
They have upped Zoe's steroid dosing to attack the rash more aggressively.
The way Manley explained it (but really, how I remember it--I guess I'm saying don't take my blog for being absolutely accurate medical fact), the donor T-cells are the ones who are attacking Zoe's skin right now. They do remove some of the T-cells from the donor stem cells to limit this sort of thing, but they can't remove them all as they help the stem cells engraft. Too many T-cells removed and the graft fails; too many T-cells left in, and they have a rampage party.
Manley said that the way Zoe's rash is progressing is classic and expected. He pointed out the signs that the steroid is doing its work, and he's really pleased that her fever is down. I think I was fooling myself about her mouth looking better, because it was looking like hamburger today.
Starting now we are wondering if the next morning lab results will show some spiking of her neutrophils and WBC's: the first signs of engraftment.
For now I will take a lab report that shows a spiking of her platelets.
Thursday, January 29, 2009
Day +8: A Long Day
Last night the journey got more bumpy.
It was my night to go home. At 2:15am I was awakened by a phone call from Jeff: Zoe's fever had climbed even higher and she had been heavily laboring to breathe, so much so that she was being sent to the PICU to be assessed. The concern was whether the mucositis had progressed far enough to obstruct her breathing passageway. If so, she might need to be intubated.
The call was a heads-up about what was happening, but Jeff said that I should still wait until the morning to come in. Neither one of us slept well after that.
Arriving this morning at the PICU, I found Zoe to be less febrile than she was in the night, with less labored breathing as well.
But, she was covered in a bright red rash. Hyper-acute GVHD had reared its head.
So, GVHD of some sort is usually expected in non-related donor situations. Manley said that the appearance of this rash is likely an explanation for why she has been febrile for the last couple days: the donated cells have been ramping up, and now we can see that they are sending out the forces to attack the enemy.
Unfortunately the enemy is our daughter, so this is not acceptable.
The question is whether they can head off the attack and calm everything down again. She was given a dose of Methylprednisone today, and will continue with it for three days. If no acceptable rash reduction response, then they will continue another three days and reassess. If she does respond well, then they can stop it without weaning her off of it during those six days of treatment.
If the rash goes away with the steroids, then that's a good sign that the GVHD is responsive to therapy, if not, well--we won't go down that road yet.
Please hold the truth and the knowing that this GVHD rash is already gone, already perfectly resolved.
The upside of the rash is that it is an indication that the donated cells are taking hold and starting to engraft. Manley said today that it is possible for engraftment to happen as early as day +10. He also said that the first place that the reappearance of WBC's in the body have an effect on is the improvement of the mouth mucositis. I don't know if I'm fooling myself or what, but it does seem to me that her mouth is looking a little better than it was even this morning.
We were sent back to our room around noon--and good thing. They were threatening to give it away as the hospital and the SCCA unit are full. Manley wanted to wait for awhile once we were back on the floor to see if the rash would go away on its own. It was seeming to fade when her fever reduced, but after awhile it was apparent that the angry red dots were planning to hang around. Steroids were ordered.
Administration of the steroids is not something done lightly for transplant patients: infection risk climbs higher, blood sugar and blood pressure rates climb. We were told that the cold and flu season hasn't even peaked in our region yet--that we are only at 5% of what they expect the cold and flu season to reach this year. Steroids further errode what little immune system the transplant patient has, further creating risk in a risky time of year.
The flu virus can slough off the skin and body of someone who feels no symptoms--and be transmitted to our girl. In her immunocompromised state the flu would be terrible and possibly deadly. This will be the first time Jeff and I will have ever recieved the flu vaccine. Just to be safe, we are going to stagger when we get it--first me, then Jeff a few days later. That way, if we were to have a reaction to it, we won't both be out of commission for Zoe.
Not taming the GVHD rash is not a good idea, however. It needs to be headed off, or else it can take up permanent residence and get worse. The risks on both sides of the issue are always considered, and they try to do what's best for Zoe. We have to be even more vigilant about hand washing, isolation, sanitation around our girl--if doing it more so than we already have is even possible.
While sitting here and typing away a nurse popped her head in to find out if Zoe had ever had, or been exposed to the chicken pox. Apparently, an attending doctor in the SCCA unit just came down with them and they are trying to get an idea of who is at risk here in the unit because of him.
Holy hell.
I myself have never had it, and am definitely not immune to it either. How a doctor could be walking around Children's and not be immune to chicken pox is beyond my comprehension.
While I was busy digesting this information, the nurse realized that the doctor did not work with transplant patients directly, so we may be in the clear. Zoe would not have been breathed on by him, and I don't think I could have contracted it by passing him in the halls.
I hope.
It was my night to go home. At 2:15am I was awakened by a phone call from Jeff: Zoe's fever had climbed even higher and she had been heavily laboring to breathe, so much so that she was being sent to the PICU to be assessed. The concern was whether the mucositis had progressed far enough to obstruct her breathing passageway. If so, she might need to be intubated.
The call was a heads-up about what was happening, but Jeff said that I should still wait until the morning to come in. Neither one of us slept well after that.
Arriving this morning at the PICU, I found Zoe to be less febrile than she was in the night, with less labored breathing as well.
But, she was covered in a bright red rash. Hyper-acute GVHD had reared its head.
So, GVHD of some sort is usually expected in non-related donor situations. Manley said that the appearance of this rash is likely an explanation for why she has been febrile for the last couple days: the donated cells have been ramping up, and now we can see that they are sending out the forces to attack the enemy.
Unfortunately the enemy is our daughter, so this is not acceptable.
The question is whether they can head off the attack and calm everything down again. She was given a dose of Methylprednisone today, and will continue with it for three days. If no acceptable rash reduction response, then they will continue another three days and reassess. If she does respond well, then they can stop it without weaning her off of it during those six days of treatment.
If the rash goes away with the steroids, then that's a good sign that the GVHD is responsive to therapy, if not, well--we won't go down that road yet.
Please hold the truth and the knowing that this GVHD rash is already gone, already perfectly resolved.
The upside of the rash is that it is an indication that the donated cells are taking hold and starting to engraft. Manley said today that it is possible for engraftment to happen as early as day +10. He also said that the first place that the reappearance of WBC's in the body have an effect on is the improvement of the mouth mucositis. I don't know if I'm fooling myself or what, but it does seem to me that her mouth is looking a little better than it was even this morning.
We were sent back to our room around noon--and good thing. They were threatening to give it away as the hospital and the SCCA unit are full. Manley wanted to wait for awhile once we were back on the floor to see if the rash would go away on its own. It was seeming to fade when her fever reduced, but after awhile it was apparent that the angry red dots were planning to hang around. Steroids were ordered.
Administration of the steroids is not something done lightly for transplant patients: infection risk climbs higher, blood sugar and blood pressure rates climb. We were told that the cold and flu season hasn't even peaked in our region yet--that we are only at 5% of what they expect the cold and flu season to reach this year. Steroids further errode what little immune system the transplant patient has, further creating risk in a risky time of year.
The flu virus can slough off the skin and body of someone who feels no symptoms--and be transmitted to our girl. In her immunocompromised state the flu would be terrible and possibly deadly. This will be the first time Jeff and I will have ever recieved the flu vaccine. Just to be safe, we are going to stagger when we get it--first me, then Jeff a few days later. That way, if we were to have a reaction to it, we won't both be out of commission for Zoe.
Not taming the GVHD rash is not a good idea, however. It needs to be headed off, or else it can take up permanent residence and get worse. The risks on both sides of the issue are always considered, and they try to do what's best for Zoe. We have to be even more vigilant about hand washing, isolation, sanitation around our girl--if doing it more so than we already have is even possible.
While sitting here and typing away a nurse popped her head in to find out if Zoe had ever had, or been exposed to the chicken pox. Apparently, an attending doctor in the SCCA unit just came down with them and they are trying to get an idea of who is at risk here in the unit because of him.
Holy hell.
I myself have never had it, and am definitely not immune to it either. How a doctor could be walking around Children's and not be immune to chicken pox is beyond my comprehension.
While I was busy digesting this information, the nurse realized that the doctor did not work with transplant patients directly, so we may be in the clear. Zoe would not have been breathed on by him, and I don't think I could have contracted it by passing him in the halls.
I hope.
Wednesday, January 28, 2009
Day +7
Zoe is simply hanging out at her very high fever--104F-ish.
This morning when I looked at her, I did a massive shudder as I could see that Zoe's head had dramatically bulged along the cranial surgery sites on the right side of her skull.
In pictures we've posted of her--just have a glance at the one on the title page-- you may have noticed that the right side of her head is strangely bulging. The right side is where a lot of reconstruction took place, as well as a significant hole during surgery in the dura-mater wrapping of her brain. It's where she had that leak back in early December, and now it's where her skull is continuing to warp and inflate with her fever.
Dr. Michael Cunningham came by today to examine it--it was very good to see him. He brings a warmth and humor with him that's nice to be around. He wasn't acutely worried, but did order up a CT scan to make certain her ventricles weren't overly large (a sign of drainage issues).
While I was away on a walk today, the results from the CT came back: Zoe's ventricles were "slightly" larger, but not enough to concern him or the neurosurgeon, Dr. Avellino. They're definitely planning to keep their eye on her though.
So far, no concerning results back from blood culture tests. Manley tells us, again, that fevers can be common--even as high as what Zoe has. Apparently when the GI tract mucosa breaks down it sends GI bacteria into the body, and fevers can result.
With the mucositis that Zoe is experiencing, it's difficult to get her to swallow Tylenol to bring the fever down. Her tongue is swollen and bloody; her mouth looks like a cavern full of fleshy stalactites. A nurse mentioned today that anyone who could formulate an IV version of Tylenol would be rich person. They continue to up Zoe's morphine drip--as expected--to deal with her deepening discomfort.
Oh, forgot to mention yesterday that there is a manufacturer's shortage of an anti-viral that they have as an important part of Zoe's protocol. Manley said that patients such as Zoe will be given precidence, but it's concerning nonetheless. Not "tear one's hair out with worry" concerning, but definitely a furrowed brow "hmmmmm" sort of concern.
Speaking of hair, Zoe's is falling out fast. It's going to be awfully strange looking at that bumpy, distorted head without any hair to camouflage it.
She's still a beautiful baby in our eyes.
This morning when I looked at her, I did a massive shudder as I could see that Zoe's head had dramatically bulged along the cranial surgery sites on the right side of her skull.
In pictures we've posted of her--just have a glance at the one on the title page-- you may have noticed that the right side of her head is strangely bulging. The right side is where a lot of reconstruction took place, as well as a significant hole during surgery in the dura-mater wrapping of her brain. It's where she had that leak back in early December, and now it's where her skull is continuing to warp and inflate with her fever.
Dr. Michael Cunningham came by today to examine it--it was very good to see him. He brings a warmth and humor with him that's nice to be around. He wasn't acutely worried, but did order up a CT scan to make certain her ventricles weren't overly large (a sign of drainage issues).
While I was away on a walk today, the results from the CT came back: Zoe's ventricles were "slightly" larger, but not enough to concern him or the neurosurgeon, Dr. Avellino. They're definitely planning to keep their eye on her though.
So far, no concerning results back from blood culture tests. Manley tells us, again, that fevers can be common--even as high as what Zoe has. Apparently when the GI tract mucosa breaks down it sends GI bacteria into the body, and fevers can result.
With the mucositis that Zoe is experiencing, it's difficult to get her to swallow Tylenol to bring the fever down. Her tongue is swollen and bloody; her mouth looks like a cavern full of fleshy stalactites. A nurse mentioned today that anyone who could formulate an IV version of Tylenol would be rich person. They continue to up Zoe's morphine drip--as expected--to deal with her deepening discomfort.
Oh, forgot to mention yesterday that there is a manufacturer's shortage of an anti-viral that they have as an important part of Zoe's protocol. Manley said that patients such as Zoe will be given precidence, but it's concerning nonetheless. Not "tear one's hair out with worry" concerning, but definitely a furrowed brow "hmmmmm" sort of concern.
Speaking of hair, Zoe's is falling out fast. It's going to be awfully strange looking at that bumpy, distorted head without any hair to camouflage it.
She's still a beautiful baby in our eyes.
Tuesday, January 27, 2009
Day +6: Some Better News
Dr. Manley just stopped by to let us know that the urine sample did clarify the initial screening that said there was blood in the urine: the urine actually had hemoglobins in it, not red blood cells.
The initial screenings are done via paper strips that indicate the presence of blood proteins. The actual urine test that is done in the lab can further characterize what the paper strips broadly interpret. Red blood cells in the urine would be quite concerning, but the presence of hemoglobins is merely a by-product of the blood transfusion she had last night.
That, is good news.
We still wait to see if anything else will show up indicating possible infectious causes for her fever that continues to burn, but nothing yet.
Manley takes comfort in the fact that, despite her fever, she looks pretty good as far as color and vital signs go.
The initial screenings are done via paper strips that indicate the presence of blood proteins. The actual urine test that is done in the lab can further characterize what the paper strips broadly interpret. Red blood cells in the urine would be quite concerning, but the presence of hemoglobins is merely a by-product of the blood transfusion she had last night.
That, is good news.
We still wait to see if anything else will show up indicating possible infectious causes for her fever that continues to burn, but nothing yet.
Manley takes comfort in the fact that, despite her fever, she looks pretty good as far as color and vital signs go.
Day +6: Fever City
Buckle up, the ride has gotten bumpy.
I arrived back at Seattle Children's this morning to Jeff telling me that Zoe's temperature was hovering at 40 celsius (that's 104F for all you Americans) all night--and she's continued that trend all day today.
Also, they've found blood in her urine.
The blood samples taken 24 hours ago did not grow any signs of bacteria yet. They just pulled some more blood this evening to be tested again. Their approach is to draw blood for testing once every 24 hours that the fever is still present. Her urine has also been sent to be tested for infections as well.
The concern is that her high fever and bloody urine points to a higher likelihood of some sort of infection, possibly bladder related.
Ugh. This is it, right here.
This is where the work for parents, like us, of children, like Zoe, lies. The watching, the waiting, the working to understand that all we can do is sit here, love her, and not let the pit of fear that this huge unknown creates overwhelm us.
I arrived back at Seattle Children's this morning to Jeff telling me that Zoe's temperature was hovering at 40 celsius (that's 104F for all you Americans) all night--and she's continued that trend all day today.
Also, they've found blood in her urine.
The blood samples taken 24 hours ago did not grow any signs of bacteria yet. They just pulled some more blood this evening to be tested again. Their approach is to draw blood for testing once every 24 hours that the fever is still present. Her urine has also been sent to be tested for infections as well.
The concern is that her high fever and bloody urine points to a higher likelihood of some sort of infection, possibly bladder related.
Ugh. This is it, right here.
This is where the work for parents, like us, of children, like Zoe, lies. The watching, the waiting, the working to understand that all we can do is sit here, love her, and not let the pit of fear that this huge unknown creates overwhelm us.
Monday, January 26, 2009
Day +5
So, today was a day of dichotomies.
Zoe started the day with more verve and pluck than I've seen in her since last Wednesday. She had periods of chattiness and even happy playfulness that were great to see after several days of pain and misery.
Then the fever started to spike.
They measure everything in celsius--anything up to 37.4 is not considered worrisome. At 37.4 they begin to monitor the temperature every 15 minutes. She got up to 38.6 this afternoon. They took some blood samples to have cultures run; they moved her chest X-ray up from tomorrow to today to see if there is anything going on in her lungs.
The upside is that her blood pressure is also a bit elevated--the nurse says that a fever with accompanying low blood pressure is more worrisome. She also, after a nap, still maintained the heightened level of alertness and engagement--also a good sign. She didn't seem to be in too much discomfort.
They tell us that fevers are common in transplant patients, and they can't always say why they occur. We'll know more in 48 hours when the blood culture results return; in the meantime they will continue to monitor her closely.
As my chiropractor, whom I visited for a much needed adjustment today, said--I have plenty of good reasons to either worry, or not worry.
So, where do I throw my energy?
Really, do I even have the capacity to choose?
Ask me again in a couple of days.
--------------------------------------------
Check the YouTube link: Zoe is continuing to expand her abilities, despite her challenges...
Zoe started the day with more verve and pluck than I've seen in her since last Wednesday. She had periods of chattiness and even happy playfulness that were great to see after several days of pain and misery.
Then the fever started to spike.
They measure everything in celsius--anything up to 37.4 is not considered worrisome. At 37.4 they begin to monitor the temperature every 15 minutes. She got up to 38.6 this afternoon. They took some blood samples to have cultures run; they moved her chest X-ray up from tomorrow to today to see if there is anything going on in her lungs.
The upside is that her blood pressure is also a bit elevated--the nurse says that a fever with accompanying low blood pressure is more worrisome. She also, after a nap, still maintained the heightened level of alertness and engagement--also a good sign. She didn't seem to be in too much discomfort.
They tell us that fevers are common in transplant patients, and they can't always say why they occur. We'll know more in 48 hours when the blood culture results return; in the meantime they will continue to monitor her closely.
As my chiropractor, whom I visited for a much needed adjustment today, said--I have plenty of good reasons to either worry, or not worry.
So, where do I throw my energy?
Really, do I even have the capacity to choose?
Ask me again in a couple of days.
--------------------------------------------
Check the YouTube link: Zoe is continuing to expand her abilities, despite her challenges...
Sunday, January 25, 2009
Day +4
The doctors keep telling us that Zoe continues to do great. I'm taking their word for it as it's hard to tell with her mouth a mucousy and torn up mess, as well as with her discomfort levels climbing.
But, her numbers continue to look good--liver function and other markers they look at are plugging along. The main development is that they've started an oxygen stream blowing by her face to help keep her oxygen saturation levels up as they had started to dip. Apparently this is a common occurrence in babies as the mucositis progresses; the smaller air passages get more easily gunked up with the sloughing of the mucosal lining.
She is on 100% TPN now that she's not taking a bottle. She can't swallow anything now.
Jeff and I are doing okay. This is definitely a grind. The person who spends the night at the hospital ends up doing a lot of napping the next day. And, even with every other night spent at home, we are both experiencing pretty profound sleep deprivation.
I keep wondering if I am on the barest verge of coming down with something, facilitated by exhaustion; so I constantly pound the immune enhancing supplements and will myself to stay healthy.
There is no other option!
But, her numbers continue to look good--liver function and other markers they look at are plugging along. The main development is that they've started an oxygen stream blowing by her face to help keep her oxygen saturation levels up as they had started to dip. Apparently this is a common occurrence in babies as the mucositis progresses; the smaller air passages get more easily gunked up with the sloughing of the mucosal lining.
She is on 100% TPN now that she's not taking a bottle. She can't swallow anything now.
Jeff and I are doing okay. This is definitely a grind. The person who spends the night at the hospital ends up doing a lot of napping the next day. And, even with every other night spent at home, we are both experiencing pretty profound sleep deprivation.
I keep wondering if I am on the barest verge of coming down with something, facilitated by exhaustion; so I constantly pound the immune enhancing supplements and will myself to stay healthy.
There is no other option!
Saturday, January 24, 2009
Day +3
It's getting more challenging. Zoe is in quite a bit of discomfort--and it's hard to watch. Her mouth is tearing up inside, she has so much mucous, she's miserable.
I know she won't consciously remember any of this, but it's very difficult to watch an innocent go through something they don't comprehend.
She's gotten so intolerant of people putting things in her mouth, especially the suction tube, that she screams angrily and whips her head from side to side in protest. At least it's clear she's maintaining some neck muscle tone.
We see sun breaks of playful Zoe here and there, but mostly otherwise she's conked out from the meds. I'm learning to love narcotics if only for the way they help her manage the pain.
I'm continuing to explore the swanky real estate around the hospital. Today my friend Risa and I walked the neighborhood and came upon a couple "free" signs in front of a water-view house. A jogger stroller and a kid's bike that attaches to the back of an adult bicycle: both in pretty great shape. We trotted back to the hospital with the bike balanced between us (neither of us wanted the jogger)--her son Zane is in for some great fun! One Laurelhurst person's junk...
I know she won't consciously remember any of this, but it's very difficult to watch an innocent go through something they don't comprehend.
She's gotten so intolerant of people putting things in her mouth, especially the suction tube, that she screams angrily and whips her head from side to side in protest. At least it's clear she's maintaining some neck muscle tone.
We see sun breaks of playful Zoe here and there, but mostly otherwise she's conked out from the meds. I'm learning to love narcotics if only for the way they help her manage the pain.
I'm continuing to explore the swanky real estate around the hospital. Today my friend Risa and I walked the neighborhood and came upon a couple "free" signs in front of a water-view house. A jogger stroller and a kid's bike that attaches to the back of an adult bicycle: both in pretty great shape. We trotted back to the hospital with the bike balanced between us (neither of us wanted the jogger)--her son Zane is in for some great fun! One Laurelhurst person's junk...
Friday, January 23, 2009
Day +2
Short update: Zoe is still doing well--for a transplant patient anyway. She is on a constant morphine drip now for pain management, she only took two ounces of milk by mouth today, and she alternates between cranky and sleeping--with a few bursts of her usual happy self here and there.
They say this is all usual and expected.
I can't decide if I want the waiting period between now and the hoped-for engraftment to fly by, or inch along. Certainly I am not in love with living mostly at the hospital--but, in the present moment, Zoe is doing well.
The present moment is all I know. I'll-- no wait, I do--take it.
They say this is all usual and expected.
I can't decide if I want the waiting period between now and the hoped-for engraftment to fly by, or inch along. Certainly I am not in love with living mostly at the hospital--but, in the present moment, Zoe is doing well.
The present moment is all I know. I'll-- no wait, I do--take it.
Thursday, January 22, 2009
Day +1
They said that Zoe would feel worse after the transplant, but I didn't know it would happen so fast. About an hour and a half into the transfusion she projectile vomited. I was worried that it was a reaction to the cells, but the nurses assured me that since her temperature and blood pressure were fine, the nausea was likely only from the chemo.
Today she has been cranky, cranky--crying a lot from pain. They had to give her a couple doses of morphine to get her settled. Her food intake is rapidly decreasing; tomorrow they will likely start her on the IV nutrition known as Total Parental Nutrition, or TPN.
All of this has been expected. But, it's a bit jolting to go from being lulled by her ongoing happy and unfazed self, to this sudden and rapid shift in mood and wellness. Not that I blame her at all. In her place I would be a much bigger mess by now.
We are told that Zoe will be feeling pretty rotten for a solid eleven days or so, but they will be managing it as best as they can. The trick is to help her get out of much of the pain, but not have her so drugged that she sleeps all the time.
Aside from drugs, her best distraction from the pain continues to be singing to her and music.
We've been making up a lot of songs.
Today she has been cranky, cranky--crying a lot from pain. They had to give her a couple doses of morphine to get her settled. Her food intake is rapidly decreasing; tomorrow they will likely start her on the IV nutrition known as Total Parental Nutrition, or TPN.
All of this has been expected. But, it's a bit jolting to go from being lulled by her ongoing happy and unfazed self, to this sudden and rapid shift in mood and wellness. Not that I blame her at all. In her place I would be a much bigger mess by now.
We are told that Zoe will be feeling pretty rotten for a solid eleven days or so, but they will be managing it as best as they can. The trick is to help her get out of much of the pain, but not have her so drugged that she sleeps all the time.
Aside from drugs, her best distraction from the pain continues to be singing to her and music.
We've been making up a lot of songs.
Wednesday, January 21, 2009
Day 0! Day-ay-ay 0!
And, hour "0" for that matter. The stem cells are infusing at this very moment. Check that YouTube link for video of the occasion!
We are tearful, happy, and also scared.
The "Beginning."
And, hopefully of good things to come.
We are tearful, happy, and also scared.
The "Beginning."
And, hopefully of good things to come.
Tuesday, January 20, 2009
Day -1
Wow. What a day! A new beginning for our country, and the cusp of a new beginning for our girl. Seems appropriate.
Her day of rest today was "uneventful"--how I am starting to love that word! She was a bit fussier, a bit more pallid in color, but other than that, it was just another day like the seven days before it.
Tomorrow the donor cells are due to be infused at 12noon. As we have not heard anything differently, I suppose we are to expect that the "harvest" went as planned. They have been flushing the Cytoxan from her, and then have to wait 12 hours after that to transplant.
Tomorrow will be her new "birthday."
Then it's a whole lot of watching and waiting for the next two to three weeks until it will be clear whether the cells engraft or not.
Let's all see those cells settling into her marrow space quickly, with ease, and with the innate sense of rightness and "home." Cells that infuse her with the osteoclasts she needs to cure her disease.
This is the prayer I ask for.
Monday, January 19, 2009
Day -2
Zoe's last dose of chemo is almost totally infused. She's sleeping in bed in front of me, still tolerating her chemo amazingly well.
Today's little excitement happened when I picked her up for one of her twice daily weigh-in's. Somehow her line that was infusing the ATG came undone and popped off. Some of the chemical splattered, and I got to experience just how caustic it is. That stuff burns! I got a couple drops on my face and neck--Zoe got some on her skin. We both received welts from the contact.
The tubing was replaced, and she was quickly hooked up again. No harm was really done, but it was startling to feel just how nasty that stuff was. I am truly amazed she's tolerating it so well. Of course, her experience is also a testament to the science of the regimen she's undergoing.
We were visited by musicians today. They played the sweet song of "Dream a Little Dream," and Zoe was rapt with attention. Come to find out this was their last day here. The funding for the program they were a part of, the "Big Apple Circus", has been cut. For eleven years children here at the hospital have been visited and entertained by members of the Big Apple Circus, but there's no longer any money for it. Another economic casualty.
I have to try to remember not to wait this late to post--my brain doesn't work as well as I would like it to! But really, that's been the case most any time of the day these days ;-).
Today's little excitement happened when I picked her up for one of her twice daily weigh-in's. Somehow her line that was infusing the ATG came undone and popped off. Some of the chemical splattered, and I got to experience just how caustic it is. That stuff burns! I got a couple drops on my face and neck--Zoe got some on her skin. We both received welts from the contact.
The tubing was replaced, and she was quickly hooked up again. No harm was really done, but it was startling to feel just how nasty that stuff was. I am truly amazed she's tolerating it so well. Of course, her experience is also a testament to the science of the regimen she's undergoing.
We were visited by musicians today. They played the sweet song of "Dream a Little Dream," and Zoe was rapt with attention. Come to find out this was their last day here. The funding for the program they were a part of, the "Big Apple Circus", has been cut. For eleven years children here at the hospital have been visited and entertained by members of the Big Apple Circus, but there's no longer any money for it. Another economic casualty.
I have to try to remember not to wait this late to post--my brain doesn't work as well as I would like it to! But really, that's been the case most any time of the day these days ;-).
Sunday, January 18, 2009
Day -3
Zoe keeps on trucking; other than our locale, the tubes coming out of her, and the fact that she's been smelling faintly of chemicals, one wouldn't really know that she's not just having her usual, normal existence.
There are cracks that reveal some of the intensity for her--today one of her doses of Benadryl was 30 minutes late (doses come every four hours now), and it showed. She was fussy, agitated and not easily comforted. Dosed up, food in, and she was a happy girl again.
Another day of glorious sun, and this time our gracious nurse shooed both Jeff and I off for a walk together. We explored the surrounding neighborhood and got some great vistas of Lake Washington. Money may not buy you love, but it will certainly buy you a gorgeous house in the Laurelhurst neighborhood!
Jeff was fine with me going home early tonight--and I've found myself rattling around aimlessly in my house. Too distracted to do something productive, too cooked by an overdosing of TV and internet to feel alright zoning out some more. Guess I'll go take a hot shower and try to go to sleep early.
Tonight Zoe has been getting a blood transfusion as her hematocrit levels are slightly down. Her fluid balance in and out is doing pretty well, she's not had any reactions to the ATG and Cytoxan so far. It's easy to find myself thinking that not much of anything is really happening to her because she doesn't really manifest many outward signs of the process--yet.
The aunt of the British baby with osteopetrosis I mentioned before just reminded me that after the actual transfusion of the transplant she will really start to feel bad. Buckle up, Mama.
There are cracks that reveal some of the intensity for her--today one of her doses of Benadryl was 30 minutes late (doses come every four hours now), and it showed. She was fussy, agitated and not easily comforted. Dosed up, food in, and she was a happy girl again.
Another day of glorious sun, and this time our gracious nurse shooed both Jeff and I off for a walk together. We explored the surrounding neighborhood and got some great vistas of Lake Washington. Money may not buy you love, but it will certainly buy you a gorgeous house in the Laurelhurst neighborhood!
Jeff was fine with me going home early tonight--and I've found myself rattling around aimlessly in my house. Too distracted to do something productive, too cooked by an overdosing of TV and internet to feel alright zoning out some more. Guess I'll go take a hot shower and try to go to sleep early.
Tonight Zoe has been getting a blood transfusion as her hematocrit levels are slightly down. Her fluid balance in and out is doing pretty well, she's not had any reactions to the ATG and Cytoxan so far. It's easy to find myself thinking that not much of anything is really happening to her because she doesn't really manifest many outward signs of the process--yet.
The aunt of the British baby with osteopetrosis I mentioned before just reminded me that after the actual transfusion of the transplant she will really start to feel bad. Buckle up, Mama.
Saturday, January 17, 2009
Day -4
Nothing really new to report: Zoe continues to do well. Last night was a bit of a grind for Jeff and Zoe as the nurses had to check her vitals and change her diapers every two hours. We'll see how much sleep she and I get tonight.
They have her on ATG and Cytoxan. With the ATG comes regular doses of Benadryl every four hours to fight nausea. Consequently she is sleeping a lot more often.
Today was glorious and sunny. Both Jeff and I got to get out for a walk. Tonight is his night with the guys.
Zoe and I stayed in and discussed the finer points of eyelashes and noses. Also, apparently there was a man, lived in the moon (and for some reason, he was oddly named "Aikin Drum").
They have her on ATG and Cytoxan. With the ATG comes regular doses of Benadryl every four hours to fight nausea. Consequently she is sleeping a lot more often.
Today was glorious and sunny. Both Jeff and I got to get out for a walk. Tonight is his night with the guys.
Zoe and I stayed in and discussed the finer points of eyelashes and noses. Also, apparently there was a man, lived in the moon (and for some reason, he was oddly named "Aikin Drum").
Friday, January 16, 2009
Day -5
Late to post today; things are still holding steady. The attending doc told us that if we only see her at the beginning and end of each day, Zoe is doing well. It's when we start seeing her in the middle of the day that we will know that Zoe is heading into scary territory.
So far, we are only seeing the doc at the bookends of the day.
Zoe is still eating by mouth, and her mostly good mood is being maintained. Her last dose of Busulfan was last night at 2am. Today they've been constantly testing her sodium levels to make certain they're at appropriate levels before they start the Cytoxan. As her levels have been low, they have been infusing her with saline to raise them to appropriate levels.
The process is still on schedule.
I got to go out with some girlfriends tonight and have a fruity cocktail; Jeff gets to go out with his buddies tomorrow night. Somehow a rhythm is emerging in our process. Even Zoe is settling into a routine of wakefulness, sleep, and play times.
Tomorrow the intensity will ramp up. We are told that she will feel worse with the Cytoxan and ATG. My baby trooper.
So far, we are only seeing the doc at the bookends of the day.
Zoe is still eating by mouth, and her mostly good mood is being maintained. Her last dose of Busulfan was last night at 2am. Today they've been constantly testing her sodium levels to make certain they're at appropriate levels before they start the Cytoxan. As her levels have been low, they have been infusing her with saline to raise them to appropriate levels.
The process is still on schedule.
I got to go out with some girlfriends tonight and have a fruity cocktail; Jeff gets to go out with his buddies tomorrow night. Somehow a rhythm is emerging in our process. Even Zoe is settling into a routine of wakefulness, sleep, and play times.
Tomorrow the intensity will ramp up. We are told that she will feel worse with the Cytoxan and ATG. My baby trooper.
Thursday, January 15, 2009
Day -6
Hip, hip, hooray--we are in a larger room! We just got moved a couple hours ago, and man-oh-man, does it make a huge difference. The other room was so small there was no place for a soap dispenser--really.
This room has about three times the floor space--and there is a proper bed for us to sleep on (instead of a saggy, lumpy sleeper chair). Counter space! Closets! Shelves! Bigger window!
Do I sound pleased? Anything that promotes parental sanity is a big bonus.
Zoe's time with the Busulfan is almost over. She's been a total champ. According to the doc, and also a nurse we talked to today, a lot of kids are totally off of food by mouth by this point--even before this. Zoe is still truckin' with her goat's milk, and is even still letting us stuff some solid foods into her (but with greater reluctance).
Tomorrow they start the Cytoxan. The doc said that they will be pumping her with fluids along with the Cytoxan, as this particular chemo drug will damage the bladder if it hangs out there for too long. So, they aim to flush her out often.
The challenge with babies, we learn, is how to keep them balanced on the fluids in and out. They can tend to hold onto fluids--as Zoe is doing slightly now--so they give them diuretics to flush them out. Over-much of the diuretics, and the kidneys work too hard. It's a fine-tuned balance they try to maintain.
Oomph, tired. This sitting around and being a neurotic parent of a transplant patient is exhausting. Night-night.
This room has about three times the floor space--and there is a proper bed for us to sleep on (instead of a saggy, lumpy sleeper chair). Counter space! Closets! Shelves! Bigger window!
Do I sound pleased? Anything that promotes parental sanity is a big bonus.
Zoe's time with the Busulfan is almost over. She's been a total champ. According to the doc, and also a nurse we talked to today, a lot of kids are totally off of food by mouth by this point--even before this. Zoe is still truckin' with her goat's milk, and is even still letting us stuff some solid foods into her (but with greater reluctance).
Tomorrow they start the Cytoxan. The doc said that they will be pumping her with fluids along with the Cytoxan, as this particular chemo drug will damage the bladder if it hangs out there for too long. So, they aim to flush her out often.
The challenge with babies, we learn, is how to keep them balanced on the fluids in and out. They can tend to hold onto fluids--as Zoe is doing slightly now--so they give them diuretics to flush them out. Over-much of the diuretics, and the kidneys work too hard. It's a fine-tuned balance they try to maintain.
Oomph, tired. This sitting around and being a neurotic parent of a transplant patient is exhausting. Night-night.
Wednesday, January 14, 2009
Day -7
Fortunately, nothing interesting to report: more of the same. Zoe continues to tolerate the Busulfan pretty well, and Jeff and I are learning how to settle into this experience.
Today we took turns getting out for a walk to U Village--only a 15 minute brisk walk via the Burke Gilman Trail. On his walk Jeff discovered that, as parents of a child being treated long-term at Seattle Children's, we get to work-out at a local gym for free. Nice!
Zoe is currently animated and chatty--and this after having the one-two punch of the Busulfan every six hours, and a recent dose of an immunoglobulin that required preemptive doses of Benadryl and Tylenol to keep her from reacting from it too much.
I am having to get over my Seattle sensibilities that dictate I recycle every last possible piece of trash. Here at the hospital they throw away things that make me cringe. Every time they bring us goat milk it is brought in a plastic baby bottle that then goes straight to the trash when finished with. Plastic bins, pitchers, cups, utensils--all thrown away. Someone needs to take the recycling revolution to the hospitals. They do have a recycling bin here and there in the halls--but mainly for paper and glass bottles. Not really a stout enough campaign to put a dent in the waste that this place produces.
-----------------------------------------------------------
Oh, forgot to mention that we have to wear gloves while changing Zoe's diapers now. Her waste is toxic and hazardous to anyone who touches it.
Bath time
360 degree view of our room.
Today we took turns getting out for a walk to U Village--only a 15 minute brisk walk via the Burke Gilman Trail. On his walk Jeff discovered that, as parents of a child being treated long-term at Seattle Children's, we get to work-out at a local gym for free. Nice!
Zoe is currently animated and chatty--and this after having the one-two punch of the Busulfan every six hours, and a recent dose of an immunoglobulin that required preemptive doses of Benadryl and Tylenol to keep her from reacting from it too much.
I am having to get over my Seattle sensibilities that dictate I recycle every last possible piece of trash. Here at the hospital they throw away things that make me cringe. Every time they bring us goat milk it is brought in a plastic baby bottle that then goes straight to the trash when finished with. Plastic bins, pitchers, cups, utensils--all thrown away. Someone needs to take the recycling revolution to the hospitals. They do have a recycling bin here and there in the halls--but mainly for paper and glass bottles. Not really a stout enough campaign to put a dent in the waste that this place produces.
-----------------------------------------------------------
Oh, forgot to mention that we have to wear gloves while changing Zoe's diapers now. Her waste is toxic and hazardous to anyone who touches it.
Bath time
360 degree view of our room.
Tuesday, January 13, 2009
Day -8
Zoe's been on the Busulfan for a day and a half now. She's mostly herself, but a bit crankier and less energetic.
Jeff stayed with her last night. They were more proactive in helping her sleep as it appeared that she was heading for the same wakefulness issue as the prior evening. With the help of Benadryl, she slept from 11pm to 4am, and after a bottle, fell back asleep until just after 7am.
Jeff and I trade off with baby duty while she's awake. We try to get a little time for ourselves away from the room. There is a therapy pool with open swim hours, so both Jeff and I have had an opportunity to take turns and go get a little exercise.
Both Zoe and Jeff have been napping for the last hour and a half. The doctor stuck her head in to tell me that they are pleased with Zoe's blood chemo levels, so they won't do much altering for now.
I asked her to remind me when patients start to really feel bad, and she said that most patients don't feel really awful until a couple days after the transplant infusion takes place. The actual days of the conditioning are characterized by some queasiness and fatigue, but in general are not usually terrible for the patient.
The mythical bacon here has lost a bit of its lustre for me. It's still as good as I remember it, but I think my body craves it less now that I'm not breastfeeding any more. Ah well, breakfast at Seattle Children's is now just another meal--and no longer the highlight to look forward to.
Perhaps I can ferret out another culinary love-affair to be had here, but somehow, I doubt it.
Jeff stayed with her last night. They were more proactive in helping her sleep as it appeared that she was heading for the same wakefulness issue as the prior evening. With the help of Benadryl, she slept from 11pm to 4am, and after a bottle, fell back asleep until just after 7am.
Jeff and I trade off with baby duty while she's awake. We try to get a little time for ourselves away from the room. There is a therapy pool with open swim hours, so both Jeff and I have had an opportunity to take turns and go get a little exercise.
Both Zoe and Jeff have been napping for the last hour and a half. The doctor stuck her head in to tell me that they are pleased with Zoe's blood chemo levels, so they won't do much altering for now.
I asked her to remind me when patients start to really feel bad, and she said that most patients don't feel really awful until a couple days after the transplant infusion takes place. The actual days of the conditioning are characterized by some queasiness and fatigue, but in general are not usually terrible for the patient.
The mythical bacon here has lost a bit of its lustre for me. It's still as good as I remember it, but I think my body craves it less now that I'm not breastfeeding any more. Ah well, breakfast at Seattle Children's is now just another meal--and no longer the highlight to look forward to.
Perhaps I can ferret out another culinary love-affair to be had here, but somehow, I doubt it.
Monday, January 12, 2009
All Settled In: Day -9
We are back at our home away from home: Seattle Children's.
Yesterday we checked in at 4:30 and were shown the tiniest room that I believe exists at Children's. After a myriad of vitals assessing Zoe was given Dilantin at 9pm, and a blood transfusion at midnight. Jeff and I agreed that I would stay with Zoe the first night; Jeff headed home for bed at about 11pm.
Zoe did not, could not fall asleep at all. Finally, after hours of Zoe's fussing, the night nurse told me at 4:30 am that the Dilantin infusion may have had something to do with the wakefulness (now she told me!), and offered to give her a dose of Benadryl to help her fall asleep. As I had not slept a wink along with Zoe, I have to admit I jumped at the offer of a sleep-aid for the tyke. I, now a basket case before the first 24 hrs in the hospital, had called Jeff at 4am to come spell me so that I could sleep. He came, I went home for a few hours, Zoe and I both caught up on some shut-eye.
Things are not quite as glum now. Amazing how sleep can improve one's outlook.
Zoe has had one dose of the Busulfan this morning, and is currently getting infused with her second dose. Busulfan is a particularly nasty chemotherapy drug that only gets used in rare cases such as bone marrow and stem cell transplants. There is a very small difference between an ineffective dose and a dose amount that will completely kill off one's bone marrow. Dreadful stuff, but I try to remember it's a necessary part of her cure.
Jeff has to do a lot more of the baby comforting for now; Zoe has finally figured out that she misses mama's milk and often gets quite upset when she hears me or is held by me. Oh baby!
We are in "isolation" due to the corona virus that Zoe has. This adds an even more complicated spin to an already challenging situation. Due to being in isolation we are not allowed to go to the common areas such as the family and nourishment rooms in the SCCA ward. We have to rely on the nurse to bring us food we have in the refrigerator--and the food that is brought to our room is not allowed to go back to the fridge as it is seen as "contaminated" and may not comingle with food from other rooms.
So, on that note, if you are signed up to bring food to us (and thank you, by the way), we can't put leftovers in the fridge. Individually wrapped servings are fine: they can go directly in the common fridge and be brought to our room as we need them.
We asked how/if the lingering of the corona virus would affect Zoe when she has no immune system. Again, it's not seen as one of the deadly ones. They expect that viruses will show up when she is immunocompromised. As they already know she has a corona virus, they will know to specifically monitor for it, as well as stay on the lookout for others.
------------------------------------------------------------------------
In the title of this post you might have noticed "Day -9". How the counting for stem cell and bone marrow transplants works is that transplant day is considered "Day 0". The conditioning days leading up to Day 0 are negative days. So, we are at nine days prior to her stem cell infusion.
Friday, January 9, 2009
Going in on Sunday, but Hair Today
We were told that actually Zoe won't be checking in to the hospital until 4pm on Sunday. Turns out they need extra time preparing the stem cells before they are infused into Zoe. The donor will keep to the same schedule.
The next day, Thursday, after Zoe's line placement and ER visit we went back to SCCA for a data review, dressing change, lab draw and infusion.
At the data review we met yet another doctor (lord if I can't remember his name) who ran us through things to expect throughout the process. Salient points: one day of Dilantin, 8 days of chemo, 1 day of rest, stem cell infusion. While stem cells generally take about 14 days to engraft, they expect osteopetrotic babies to take up to 21 days. After engraftment then it's a waiting game for the WBC levels to come back up to acceptable levels.
The Doc said that complications are an expected part of the process. It will involve many, many fires--big and little--to put out. The good news is that babies tend to do a lot better than adults with transplant. Bad news includes things like the chemo making Zoe sterile, as well as heightening her risk of contracting leukemia, lymphoma or some other cancer down the line--in about 15 years.
Well, there's a lot more bad news than that, but I just don't really want to think about it right now.
The lab draw and infusion were heavenly, compared to what they were like prior to the Hickman being put in. She actually slept through them.
------------------------------------------------------------
So, about the hair. It's gone. Mine, that is--and Jeff's too.
I felt like doing something drastic, so I shaved it off (well, Jeff actually did) and I am sending it to "Locks of Love" to be made into a wig for a child cancer patient.
Our friend Tyler donated his hair as well, and we had quite the fun shaving party--click here to see some pics. Also, check the YouTube link--I'll post a video there.
Extreme times call for extreme measures--within reason!
The next day, Thursday, after Zoe's line placement and ER visit we went back to SCCA for a data review, dressing change, lab draw and infusion.
At the data review we met yet another doctor (lord if I can't remember his name) who ran us through things to expect throughout the process. Salient points: one day of Dilantin, 8 days of chemo, 1 day of rest, stem cell infusion. While stem cells generally take about 14 days to engraft, they expect osteopetrotic babies to take up to 21 days. After engraftment then it's a waiting game for the WBC levels to come back up to acceptable levels.
The Doc said that complications are an expected part of the process. It will involve many, many fires--big and little--to put out. The good news is that babies tend to do a lot better than adults with transplant. Bad news includes things like the chemo making Zoe sterile, as well as heightening her risk of contracting leukemia, lymphoma or some other cancer down the line--in about 15 years.
Well, there's a lot more bad news than that, but I just don't really want to think about it right now.
The lab draw and infusion were heavenly, compared to what they were like prior to the Hickman being put in. She actually slept through them.
------------------------------------------------------------
So, about the hair. It's gone. Mine, that is--and Jeff's too.
I felt like doing something drastic, so I shaved it off (well, Jeff actually did) and I am sending it to "Locks of Love" to be made into a wig for a child cancer patient.
Our friend Tyler donated his hair as well, and we had quite the fun shaving party--click here to see some pics. Also, check the YouTube link--I'll post a video there.
Extreme times call for extreme measures--within reason!
Wednesday, January 7, 2009
Back again
It's 11:15pm and we are hanging out in the ER.
After a two hour nap, Zoe woke up with blood soaked through her jammies. The area around the little disk on her chest (see pics on the last post) was covered with a pool of blood underneath the dressing and was leaking out rather determinedly.
We paged the on-call thoracic surgeon, and he agreed that we should go to the ER to have it looked at and dealt with.
So far, those who have looked at her agree that the bleeding is due to the combination of her low platelet count and the blood thinners she's on.
Her dressing has been changed and we are waiting for discharge.
When driving here we mused that this would likely be the first of many trips to the ER.
Transplant experience is usually never straight forward.
After a two hour nap, Zoe woke up with blood soaked through her jammies. The area around the little disk on her chest (see pics on the last post) was covered with a pool of blood underneath the dressing and was leaking out rather determinedly.
We paged the on-call thoracic surgeon, and he agreed that we should go to the ER to have it looked at and dealt with.
So far, those who have looked at her agree that the bleeding is due to the combination of her low platelet count and the blood thinners she's on.
Her dressing has been changed and we are waiting for discharge.
When driving here we mused that this would likely be the first of many trips to the ER.
Transplant experience is usually never straight forward.
After a long day
We checked in this morning at 11am so that the HemOnc (hematology-Oncology) unit could infuse Zoe with platelets and hydrate her prior to her 3:30 surgery. A lab test on Monday had shown that her platelet counts were quite low (unsurprising for an osteopetrotic baby), necessitating the transfusion. As she was not allowed to have food or liquids past 10:30 am, they wanted to keep her hydrated intravenously.
It all went quite smoothly; the biggest stress was dealing for hours with one very hungry and unhappy baby. The actual procedure was only an hour, but we didn't leave the hospital until 7pm--a full 8 hour day.
Her line looks good, her belly is now full, and she's snoring in the little bed behind me.
While in the hospital we got a tour of the SCCA unit at Seattle Children's. It is isolated from the rest of the floor with doors and big signs that scream "IF YOU ARE SICK, DO NOT ENTER!" It has its own HEPA filtration system separate from the rest of the hospital's (something I had been wondering about. It has play areas, TV areas, a teen room, family room, and lots of bikes and big wheels to ride around the hallways. Jeff, of course, wanted to know if he could ride the bikes too. We saw a small unoccupied room as an example of what we might be staying in; they tell us that the big ones are currently full, but that we will likely be able to move into a big one later.
It turns out that we will be able to have visitors while in the SCCA unit, as long as they are well. I would say, no small kids though--it's too tortuous for a non-patient child to understand that they just can't play on all the great (and sanitized) toys scattered all around.
-----------------------------------------------
We got the transcription notes back from last week's big meeting, but I just haven't even opened them yet. I probably won't revise that last long post as promised. Too much.
I found out why they preferred bone marrow over stem cell donation: reduced risk of GVHD with actual marrow donation. Donor services said that they did send the donor the message that the docs would much prefer marrow, but the word back from the donor was "absolutely not," she was only willing to donate stem cells (stem cell donation is through blood pheresis , marrow donation is through surgery done under general anesthesia).
I spent a bit of time being really frustrated with this--why would someone sign up for donation and not be willing to go all the way?
Meeting with a donor services person put it into perspective for us. We have a 10/10 match--this is wonderful. None of the other osteopetrosis transplants at SCCA have had a 10/10 match. Zoe has a very unique and unusual set of genetic encoding--so it's great that there is even such a good match. A 10/10 match takes precedence over the type of product, so a 10/10 stem cell donation is seen as preferable to a 9/10 marrow donation. The refusal to donate marrow may be based on medical reasons (an allergy to anesthesia for example) over personal preference--but privacy laws will not let us know why.
And, the donor still has quite an ordeal to commit to donating stem cells: she has to have daily shots for 5 days prior to the donation that will boost her stem cells. These shots will make her experience flu-like symptoms and she must be monitored for 2 hours after every shot. Some employers don't give benefits for marrow or stem cell donation procedures, so she may be doing this on vacation leave or her own dime as far as income loss goes.
She has signed the consent for the procedure, so that says that she is committed. I asked what the follow-through rate was for donors, and we were told it was surprisingly high. Apparently, those identified as matches who go through all the preliminary testing are very well aware of the important role they play.
So, keep our anonymous donor in your thoughts and prayers so that she is supported in her process and able to complete the donation successfully, without harm to herself or livelihood.
----------------------------------------------------
We learned how to care for Zoe's Hickman line yesterday (only yesterday?? seems like ages ago). We are going to become her dedicated nursing staff. Jeff already gives her twice daily injections of blood thinner and three times daily doses of medicine. In the hospital these duties will be taken over by the nursing staff, but when we go home again, there will be much to do for our girl. We are told to expect her to still be on an IV when discharged, and she will need all sorts of maintenance while we wait to see how successful things are in the long run.
But I get ahead of myself. We still have to get through the short run.
Tomorrow we return to SCCA for something called a "data review", her dressing will get changed, lines flushed, she will get a blood draw (through the line; no more pokes), and we will take some sort of class that I have forgotten what it's about. The lab draw got added on today as we were told that SCCA received a sample of the "donor product", so I guess they are going to do some more matching or cross examining or such.
My mind loses the details when it's tired.
By the way, while we do check-in to the hospital on Saturday, she will only be getting Dilantin that day. As one of the chemo drugs has the possibility of causing seizures, they administer Dilantin as a preventative measure. Sunday the chemo will start.
------------------------------------------------------------
I've made friends with the aunt of another little girl with osteopetrosis who is in the UK. I found her by doing a search on YouTube using the word "osteopetrosis". Check out her link. As the baby, Alishba, is Asian, there was no donor match to be found. Two of her aunt's videos are entreaties for Asian people to become donors. Alishba has since been transplanted with a 5/6 cord blood match. Her transplant process started shortly after her first birthday back in the end of November. So far, she is doing well. Her videos remind me so much of Zoe--all sweetness.
-------------------------------------------------------------
Last Friday we experienced our Christmas-After-Christmas, sponsored by our good postal workers at the Bitterlake Station, Seattle. Carol, Jody and Dan showed up bearing several gifts all beautifully wrapped. Many tears and many smiles--for everyone. We were so touched by their generosity. Many things they gave us we needed; we sent those things we could not use on to the women's shelter and food bank so as to pay the blessings forward.
Getting to know the wonderful people of our local post office makes my connection to our neighborhood and community feel stronger. It's too easy to feel isolated, especially in the midst of a medical saga; everything that chips away at that isolation helps to contribute to good medicine for us.
So, on that subject, I--we--thank all of you who check in to this blog regularly, those who leave comments, send us email and cards, and call us. You are an important part of our process: you also combat our isolation and help our sanity. If we don't always respond, know that your messages are so very important--and very needed.
Tuesday, January 6, 2009
More Birthday Shots
I do have details to update, as we have been going at it with the meetings and appointments the last couple days at SCCA. But, it's late, and I will have time tomorrow to catch you up while we wait during Zoe's central line placement surgery.
We didn't do really anything special for Zoe's first birthday--the need to avoid germs and our crazy schedule preempted a proper party for our girl (thankfully she's too young to remember!) We did buy her a Trophy cupcake, and Jeff's brother Martin swung by in time to help us sing to her and give Zoe her first taste of sugar.
Luckily, I don't think she's a fan.
The girl's had a rough year, but I don't think she was as bothered by it as much as we were. So much joy, so much terror. All so, so worth it.
(P.S. Check the YouTube link for some more Zoe videos!)
Thursday, January 1, 2009
Milking, Part 3
Zoe will be weaned by next Saturday. Come to find out after all the gyrations on this subject that SCCA flat-out forbids nursing during transplant. After meeting with one of the oncologists yesterday, Dr. Delaney, I understand more the rationale behind the mandate.
Dr. Delaney confirmed that it was not a proven risk, and she certainly knew where I was coming from as a mother who had nursed her own two children. But she made a couple very convincing arguments that gave us pause:
And, it still really sucks.
I did inquire about resuming the nursing on the other side of the process. I had thought to pump three times a day to maintain at least a small milk supply for her to enjoy when the go-ahead was given. But, the word was that it would be six months MINIMUM before she would be allowed to nurse again, and much more likely, at least a year. I am devoted to my girl, but the prospect of pumping for a year is a deal killer. Even if I were willing, there's no guarantee that she'd even accept the breast after that long off of it.
So, I've got one more week of this unique experience that mothers get to have with their babies. And I am soaking up every last second of it.
------------------------------------
We didn't really realize how much of the process would start before she was admitted on the 10th, but now we see that the big ball has already been set in determined motion. Tuesday and Wednesday were long days at SCCA; next Monday and Tuesday will be just as long with the meetings and classes we need to attend on the various subjects involving home care for a transplant patient. Wednesday will be Zoe's surgery to put in her central line. Thursday they want us to come in for who-knows-what, but something important, I'm sure. Then, Zoe will be admitted on Saturday the 10th.
Which reminds me: the results of Zoe's nasal aspiration came back positive for a "corona virus." While it could prove to be a nuisance, it's not a virus considered too dangerous to continue with the current schedule. Provided that she continues to improve, she should still be good to go on the 10th.
We found out some more details on the donor front--mixed things that don't necessarily comfort me on the whole. The good news is that she has a donor; some 30% of patients don't have good matches. However, those that do usually have around 100 to choose from. Zoe had 3. Of those 3, only one responded--the 39 year old woman we mentioned prior.
As great as it is that the woman is a 10 out of 10 match, there are a couple drawbacks. Number one, she wasn't willing to donate marrow, but opted instead for donating stem cells. While not the end of the world, it's not the first choice for what the doctors wanted for Zoe. Stem cells can still definitely work--and the good news there is that with stem cells they will know more quickly whether engraftment happens as stem cells engraft faster than bone marrow. I am realizing that I don't remember why the doctors' first choice was marrow over stem cells, but that was what they had originally told us.
The other drawback is that transplants with female donors have a higher rate of failure than those with male donors. It really has more to do with women who have had children, rather than the gender alone. Mothers produce more antibodies with each child they bear, which makes GVHD more possible. We don't know if Zoe's donor has had children, but, given her age, it's highly likely.
Again, Zoe's match is still pretty damn great, but I gathered that they would have done some more poking around for options if it weren't for the fact that insurance limits how much can be spent on the search process.
Given the scenario that these donor cells fail to engraft, Delaney said that cord blood is definitely a fine alternative for a back-up plan. (Good to know there is a back-up!) She said that, in fact, all of their recent osteopetrosis patients have been transplanted with mismatched cord blood as there were no good donor matches to be had.
Again, their success rate with osteopetrosis is 50% with unrelated donors, but she said to keep in mind that this number goes way back to 1981 with their first osteopetrosis patient, and the technology has improved exponentially since then. They have treated 7 osteopetrosis patients total--as opposed to thousands of leukemia patients. And, remember, SCCA is the place to go for tip top transplant services--the man himself who invented the procedure is based there.
Did I mention Zoe has an extremely rare disorder?
--------------------------------------------------
This post has been a rambling, disjointed one. I am going off of memory as opposed to notes. There was a woman there jotting stuff down for us (provided by Seattle Children's), but I don't know when she'll be emailing me her notes. I'll likely tweak this entry when I do--so, if you're a stickler for facts, check back in a few days for the corrections.
Dr. Delaney confirmed that it was not a proven risk, and she certainly knew where I was coming from as a mother who had nursed her own two children. But she made a couple very convincing arguments that gave us pause:
- Osteopetrosis is a particularly difficult disorder to transplant for. The reduced bone marrow space makes engraftment more difficult. If engraftment is successful, then the next, even bigger concern is Graft Versus Host Disease (GVHD). While maternal lymphocyte transmission risk is small during breastfeeding, it's still possible. Even one errant T-cell that makes its way from my milk into Zoe's body (beyond the GI tract) could wreak enough havoc to either interfere with engraftment or complicate GVHD.
- SCCA oncologists have witnessed transplant failures they believe were directly linked to the patient being breastfed during the process. When asked why this had not been written about, her response was that--understandably-- there are so many aspects yet to be written about in this field. It comes down to the researchers and docs directly involved having enough time to do so.
And, it still really sucks.
I did inquire about resuming the nursing on the other side of the process. I had thought to pump three times a day to maintain at least a small milk supply for her to enjoy when the go-ahead was given. But, the word was that it would be six months MINIMUM before she would be allowed to nurse again, and much more likely, at least a year. I am devoted to my girl, but the prospect of pumping for a year is a deal killer. Even if I were willing, there's no guarantee that she'd even accept the breast after that long off of it.
So, I've got one more week of this unique experience that mothers get to have with their babies. And I am soaking up every last second of it.
------------------------------------
We didn't really realize how much of the process would start before she was admitted on the 10th, but now we see that the big ball has already been set in determined motion. Tuesday and Wednesday were long days at SCCA; next Monday and Tuesday will be just as long with the meetings and classes we need to attend on the various subjects involving home care for a transplant patient. Wednesday will be Zoe's surgery to put in her central line. Thursday they want us to come in for who-knows-what, but something important, I'm sure. Then, Zoe will be admitted on Saturday the 10th.
Which reminds me: the results of Zoe's nasal aspiration came back positive for a "corona virus." While it could prove to be a nuisance, it's not a virus considered too dangerous to continue with the current schedule. Provided that she continues to improve, she should still be good to go on the 10th.
We found out some more details on the donor front--mixed things that don't necessarily comfort me on the whole. The good news is that she has a donor; some 30% of patients don't have good matches. However, those that do usually have around 100 to choose from. Zoe had 3. Of those 3, only one responded--the 39 year old woman we mentioned prior.
As great as it is that the woman is a 10 out of 10 match, there are a couple drawbacks. Number one, she wasn't willing to donate marrow, but opted instead for donating stem cells. While not the end of the world, it's not the first choice for what the doctors wanted for Zoe. Stem cells can still definitely work--and the good news there is that with stem cells they will know more quickly whether engraftment happens as stem cells engraft faster than bone marrow. I am realizing that I don't remember why the doctors' first choice was marrow over stem cells, but that was what they had originally told us.
The other drawback is that transplants with female donors have a higher rate of failure than those with male donors. It really has more to do with women who have had children, rather than the gender alone. Mothers produce more antibodies with each child they bear, which makes GVHD more possible. We don't know if Zoe's donor has had children, but, given her age, it's highly likely.
Again, Zoe's match is still pretty damn great, but I gathered that they would have done some more poking around for options if it weren't for the fact that insurance limits how much can be spent on the search process.
Given the scenario that these donor cells fail to engraft, Delaney said that cord blood is definitely a fine alternative for a back-up plan. (Good to know there is a back-up!) She said that, in fact, all of their recent osteopetrosis patients have been transplanted with mismatched cord blood as there were no good donor matches to be had.
Again, their success rate with osteopetrosis is 50% with unrelated donors, but she said to keep in mind that this number goes way back to 1981 with their first osteopetrosis patient, and the technology has improved exponentially since then. They have treated 7 osteopetrosis patients total--as opposed to thousands of leukemia patients. And, remember, SCCA is the place to go for tip top transplant services--the man himself who invented the procedure is based there.
Did I mention Zoe has an extremely rare disorder?
--------------------------------------------------
This post has been a rambling, disjointed one. I am going off of memory as opposed to notes. There was a woman there jotting stuff down for us (provided by Seattle Children's), but I don't know when she'll be emailing me her notes. I'll likely tweak this entry when I do--so, if you're a stickler for facts, check back in a few days for the corrections.
Subscribe to:
Posts (Atom)