This day has gone from bad to worse. Last night Jacob started spiking fevers and so they switched him over to a stronger antibiotic.
Even though he got GCSF yesterday to boost his anc, this morning's labs showed that it actually dropped ten points. He got more GCSF today.
After two more doses of treatment, J's adenovirus count actually jumped back up to 200,000 again. This could explain his fevers. They will have to increase the dose size, frequency, or both.
All of J's c diff symptoms returned in full force today. They switched him to a stronger med for that.
After a gut xray, J was diagnosed with pneumatosis. It causes a lot of stomach pain. He is getting switched over to everything iv- no food or drink, to give his stomach a rest.
This is why I am always holding my breath.
Friday, June 29, 2012
Thursday, June 28, 2012
Day +82
We got Jacob's latest chimerisms today with more reassurance. Sorry for the redundancy, but given Jacob's graft rejection last year, every time we get any kind of test results showing donor cells are indeed engrafted, helps me to breathe a little easier. The current results are: nk cells, myeloid cells, and b cells are all 100% donor. T cells are at 80%. Jacob's doctor had warned us that they would be the slowest to grow in. I don't know why it's so hard for me to rejoice in the good news. I guess I always have my guard up waiting for the next trial with Jacob's health. For example...
I was hoping to maybe get discharged soon, or at least to take him out of the hospital on a pass today, but last night and today Jacob starting running a low grade fever and complaining of stomach pain. They ran cultures this morning, but so far, no new infections have been identified. They also started him on a broad spectrum antibiotic just to be sure. They will run it for 72 hours and if the cultures are still negative, they will stop it. Other causes of the fever could be: the adenovirus, c diff, or a flare up of his gut gvhd. The adeno and c diff are being treated. He has a scope scheduled for Monday to test for the gvhd. It will be nice to have some answers, but I really hope it's not gvhd, because I'd like to get him off his immunosuppressants. This hospital stay is ending up longer than I had planned, but it's nice to have him watched so closely. He slept all day and just woke up around 5pm, so we could be in for a long night.
I was hoping to maybe get discharged soon, or at least to take him out of the hospital on a pass today, but last night and today Jacob starting running a low grade fever and complaining of stomach pain. They ran cultures this morning, but so far, no new infections have been identified. They also started him on a broad spectrum antibiotic just to be sure. They will run it for 72 hours and if the cultures are still negative, they will stop it. Other causes of the fever could be: the adenovirus, c diff, or a flare up of his gut gvhd. The adeno and c diff are being treated. He has a scope scheduled for Monday to test for the gvhd. It will be nice to have some answers, but I really hope it's not gvhd, because I'd like to get him off his immunosuppressants. This hospital stay is ending up longer than I had planned, but it's nice to have him watched so closely. He slept all day and just woke up around 5pm, so we could be in for a long night.
Monday, June 25, 2012
Day +79
After a couple of rough days of tummy aches, Jacob turned a huge corner today. He was playing and eating again, which couldn't make me happier. It looks like the medicine is kicking that nasty stomach infection. Now we just have to hope and pray that it didn't flare up his gvhd so that he can continue to taper off the steroids and other accompanying drugs.
Speaking of drugs, Jacob was FINALLY able to come off a medication. His blood pressure was a little low, so they stopped one of his two blood pressure medications. We've only been adding drugs since we got discharged in May, so it's been nice to stop at least one.
Now onto the adenovirus. We got word back today that after just the one dose of medicine on Friday, the viral copies dropped from 230,000 all the way down to 88,000 today. This means that the treatment is working very quickly! They originally said it could take a week to see any effect, so this is wonderful news. He is getting another dose of the treatment as I write this.
The last bit of exciting news from today is that Jacob's neutrophil oxidative burst test came back completely normal. No more CGD. We already suspected this based on his chimerisms, but he hasn't had this test done since pre transplant work ups when he only had 2% functioning neutrophils, so it was just wonderful news to hear! Once Jacob recovers from transplant in about a year, he will have a normal functioning immune system for the first time in his life.
Thank you for your continued prayers for Jacob's complete healing and chance at a normal life. We love him so much!
Speaking of drugs, Jacob was FINALLY able to come off a medication. His blood pressure was a little low, so they stopped one of his two blood pressure medications. We've only been adding drugs since we got discharged in May, so it's been nice to stop at least one.
Now onto the adenovirus. We got word back today that after just the one dose of medicine on Friday, the viral copies dropped from 230,000 all the way down to 88,000 today. This means that the treatment is working very quickly! They originally said it could take a week to see any effect, so this is wonderful news. He is getting another dose of the treatment as I write this.
The last bit of exciting news from today is that Jacob's neutrophil oxidative burst test came back completely normal. No more CGD. We already suspected this based on his chimerisms, but he hasn't had this test done since pre transplant work ups when he only had 2% functioning neutrophils, so it was just wonderful news to hear! Once Jacob recovers from transplant in about a year, he will have a normal functioning immune system for the first time in his life.
Thank you for your continued prayers for Jacob's complete healing and chance at a normal life. We love him so much!
Saturday, June 23, 2012
Day +77
We are back in hospital. Jacob's adenovirus count was up to 230,000 yesterday (up from 37,000 on Monday), so we don't have time to mess around with the trial medication. Jacob is getting Cidofovir 3 times a week for the virus. I wish they would have just started him on it Monday when we first came in instead of wasting so much time letting the virus grow while waiting for the trial to get all set up. They will recheck the virus twice a week to make sure the medicine is effective. Just to clarify, the adenovirus was a virus J already had in his system from before transplant. He actually had it even before his first transplant and had it reactivate during his conditioning last year. Luckily the Cidofovir worked last time and we are hoping that it works again. When the t cells are wiped out during conditioning, old viruses, such as adeno, can be reactivated. Since J's t cells are still young and immature, the virus was able to reactivate without any effective way to be kept under control.
We also found out that he has a c diff infection, which has been causing him a lot of stomach pain. He is on Flagyl for that. Even though I put it through his ng this morning, it made him throw up.
Jacob's blood counts have been steadily declining the past few weeks. Platelets are down to 30, hematocrit 25 (getting blood today), and ANC down to 800. They don't know why. Could be the infections. I'm guessing we could be here as long as a week. They need to make sure the therapies are working before letting us do outpatient. Some of his day 80 work ups that were scheduled for next week can be done inpatient, but others will have to be rescheduled, delaying our return home a bit. Glad we are here where they can keep a close eye on him.
We also found out that he has a c diff infection, which has been causing him a lot of stomach pain. He is on Flagyl for that. Even though I put it through his ng this morning, it made him throw up.
Jacob's blood counts have been steadily declining the past few weeks. Platelets are down to 30, hematocrit 25 (getting blood today), and ANC down to 800. They don't know why. Could be the infections. I'm guessing we could be here as long as a week. They need to make sure the therapies are working before letting us do outpatient. Some of his day 80 work ups that were scheduled for next week can be done inpatient, but others will have to be rescheduled, delaying our return home a bit. Glad we are here where they can keep a close eye on him.
Wednesday, June 20, 2012
Day +74
Just a quick update:
We were discharged last night after a frustrating and physically and emotionally draining day. Ultimately we decided not to treat with iv Cidofovir because of its potential to permanently damage Jacob's kidneys, which are already being taxed by the tacrolimus. The other options were to do nothing to see if he got worse or remained non symptomatic, or to do a blinded trial oral Cidofovir called CMX001 which is supposed to be non toxic to the kidneys. We decided to do the trial for a week to see if it helps and then reassess from there. Since it's blinded, that means there's a 1 out of 3 chance that he is getting a placebo. Annoying, but we can ask for an open label if Jacob worsens or does not improve with treatment. This could potentially delay our return home depending on how many weeks it takes to clear up the virus. Jacob will also get an early ivig infusion tomorrow for some added protection even though he isn't due until next week.
Jacob is still having leg pain and falling down a lot. We've increased his calcium and he has a bone density scan next Wednesday.
We were discharged last night after a frustrating and physically and emotionally draining day. Ultimately we decided not to treat with iv Cidofovir because of its potential to permanently damage Jacob's kidneys, which are already being taxed by the tacrolimus. The other options were to do nothing to see if he got worse or remained non symptomatic, or to do a blinded trial oral Cidofovir called CMX001 which is supposed to be non toxic to the kidneys. We decided to do the trial for a week to see if it helps and then reassess from there. Since it's blinded, that means there's a 1 out of 3 chance that he is getting a placebo. Annoying, but we can ask for an open label if Jacob worsens or does not improve with treatment. This could potentially delay our return home depending on how many weeks it takes to clear up the virus. Jacob will also get an early ivig infusion tomorrow for some added protection even though he isn't due until next week.
Jacob is still having leg pain and falling down a lot. We've increased his calcium and he has a bone density scan next Wednesday.
Monday, June 18, 2012
Day +72 Part 2
I write this from the hospital. We got a call around 6:30, just as I was getting Jacob into the bath, that his adenovirus count went from 300 last week to 22,000 today and that they would have a room ready for him at the hospital at 7:30. He still doesn't have any symptoms, which is good, but they want to run some more tests to see if the virus is found any where else besides his blood. Most likely he will start Cidofovir tomorrow which is a weekly medication to wipe out the virus. I will get a better picture of his treatment plan tomorrow, but we shouldn't have to be here more than a couple of days. The doctor said that this virus is "as common as dirt" in transplant patients, which is why they screen for it weekly. We will still be able to keep our immunology appointment tomorrow since it is here at the hospital. Please pray that the treatment will be effective against the the virus. Jacob is still immunosuppressed and will need the help of this drug.
Day +72
This week we begin all of our work ups to get ready to be released to go back home around Day +100. They call them the Day +80 work ups, even though they span over the next few weeks. This week, in addition to our clinic visit and blood draws, we have a visit with the immunologist. I look forward to talking to him about Jacob's immune health outlook.
Overall, Jacob has been doing well. However there a few issues we are working through. One is that his blood cultures came back positive for adenovirus last week. They said it wasn't very much and we shouldn't be concerned at this point. They cultured him for it again today, so we will see what's going on with it. He hasn't really had any symptoms, so I think his body and medicines are keeping it under control, but we should hear back on the cultures in a couple of days.
Another thing is that Jacob's legs have been bothering him. His right knee hurt so badly on Saturday that he couldn't even walk. A variety of factors could cause this, but in my opinion, it's most likely from how sedentary he is. He doesn't like being active and spends the majority of the day wanting to watch tv. I know I'm guilty for allowing this, so I'm trying to get better at encouraging him to move around more. I also ditched the stroller when we go to clinic and pharmacy.
The last thing is just trying to keep his body chemistry and liver and kidneys happy while on so many medicines. The tacrolimus (immunosuppressant gvhd drug) depletes the body of magnesium. We have been increasing his mg supplement weekly because it keeps coming back low in his blood work. The tacrolimus and prednisolone cause high blood pressure, so he's still on two meds for that and is being monitored. The tacrolimus, voriconzole (anti fungal), and acyclovir (antiviral), are hard on his kidneys and liver, so his bilirubin and creatinine have been slightly elevated. And the prednisolone depletes calcium, so he is taking calcium supplements to counteract that side effect. Luckily, we are almost done tapering off prednisolone. It's due to finish July 3rd as long as his gvhd doesn't flare up. He comes off of tacrolimus 6 weeks after that. I look forward to cutting back on the amount of medications that he's on and hopefully even taking out his ng tube when he's down to 5 meds or so. Right now he takes 17 meds and supplements and receives 500ml of supplemental water through his ng, so it's still rather intensive. I'm happy things are moving in the right direction though. Thank you for your continued prayers!
Overall, Jacob has been doing well. However there a few issues we are working through. One is that his blood cultures came back positive for adenovirus last week. They said it wasn't very much and we shouldn't be concerned at this point. They cultured him for it again today, so we will see what's going on with it. He hasn't really had any symptoms, so I think his body and medicines are keeping it under control, but we should hear back on the cultures in a couple of days.
Another thing is that Jacob's legs have been bothering him. His right knee hurt so badly on Saturday that he couldn't even walk. A variety of factors could cause this, but in my opinion, it's most likely from how sedentary he is. He doesn't like being active and spends the majority of the day wanting to watch tv. I know I'm guilty for allowing this, so I'm trying to get better at encouraging him to move around more. I also ditched the stroller when we go to clinic and pharmacy.
The last thing is just trying to keep his body chemistry and liver and kidneys happy while on so many medicines. The tacrolimus (immunosuppressant gvhd drug) depletes the body of magnesium. We have been increasing his mg supplement weekly because it keeps coming back low in his blood work. The tacrolimus and prednisolone cause high blood pressure, so he's still on two meds for that and is being monitored. The tacrolimus, voriconzole (anti fungal), and acyclovir (antiviral), are hard on his kidneys and liver, so his bilirubin and creatinine have been slightly elevated. And the prednisolone depletes calcium, so he is taking calcium supplements to counteract that side effect. Luckily, we are almost done tapering off prednisolone. It's due to finish July 3rd as long as his gvhd doesn't flare up. He comes off of tacrolimus 6 weeks after that. I look forward to cutting back on the amount of medications that he's on and hopefully even taking out his ng tube when he's down to 5 meds or so. Right now he takes 17 meds and supplements and receives 500ml of supplemental water through his ng, so it's still rather intensive. I'm happy things are moving in the right direction though. Thank you for your continued prayers!
Tuesday, June 12, 2012
Day+66 Jacob's Birthday
I can hardly believe my baby is 4! I feel so incredibly blessed to have Jacob in our family. He brings so much joy and love to all who know him. In his four short years on this earth, he has had to endure more pain and suffering than most people experience in a life time, yet he remains happy, kind, courageous, and strong. He has taught me what is really important in life. I love and adore him more than I could possibly express. Happy Birthday, Jacob, and may the coming year bring healing and a new beginning!
Here's a little trip down memory lane:
Here's a little trip down memory lane:
Jacob's 4th Birthday (Pete Gross House, Seattle)
Jacob's 3rd Birthday (Children's Hospital Los Angeles)
Jacob's 2nd Birthday (Grandma & Grandpa's House)
Jacob's 1st Birthday (Grandma & Grandpa's House)
Jacob at Birth
Saturday, June 02, 2012
Day +56
This week has been so fun having Ethan and Dan here visiting. I love how Jacob and Ethan don't even skip a beat. It's like they haven't been separated at all. I'm so grateful that they are best friends and that Ethan is an amazing big brother.
Yesterday we received some encouraging news on Jacob's latest chimerism. Both his myeloid and nk cells have remained 100% donor. His t cells grew from 76% donor cells last month to 80% donor cells now. And finally, his b cells went from 87% donor last month to 98% donor currently. If I may be so bold to say it, I think Jacob is going to hold onto his new marrow and be cured of cgd. Another chimerism will be done around day 80.
Other good news is that Jacob came off his nightly hydration infusion. The team wants to access his central line as little as possible and even talked about having it removed around day 90.
I am so grateful for our Father in Heaven's tender mercies. He has seen it fit to bless us so abundantly. We have an incredible, vigilant, top notch team of doctors and nurses. I could not imagine a more thorough, knowledgable, and caring team. We have the most amazing and supportive family and friends who have been with us every step of the way.
Here are pictures from our week with Dan and Ethan:
Yesterday we received some encouraging news on Jacob's latest chimerism. Both his myeloid and nk cells have remained 100% donor. His t cells grew from 76% donor cells last month to 80% donor cells now. And finally, his b cells went from 87% donor last month to 98% donor currently. If I may be so bold to say it, I think Jacob is going to hold onto his new marrow and be cured of cgd. Another chimerism will be done around day 80.
Other good news is that Jacob came off his nightly hydration infusion. The team wants to access his central line as little as possible and even talked about having it removed around day 90.
I am so grateful for our Father in Heaven's tender mercies. He has seen it fit to bless us so abundantly. We have an incredible, vigilant, top notch team of doctors and nurses. I could not imagine a more thorough, knowledgable, and caring team. We have the most amazing and supportive family and friends who have been with us every step of the way.
Here are pictures from our week with Dan and Ethan:
Bananas in Pajamas
Bubbles
Snakes
Best Friends
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