Day +146 still here

It's 4:17am and after several futile attempts at getting Jacob back to sleep, he is now looking at books in his bed. We are hopefully getting discharged today, not that he's necessarily doing a whole lot better, but at least the pneumatosis is all cleared up. I just changed 5 diapers in the last hour, which is pretty much how it's been throughout the day time hours as well. After all the tests and procedures that have been run these past two weeks, Jacob came back negative for gvhd and is now up to 100% engraftment with his new donor cells. All respiratory and blood cultures came back negative for infection. Even the rhinovirus cleared after 5 days and never caused any symptoms, thankfully. The one thing that was discovered after his million dollar work up however, was a positive pcr result for the cursed adenovirus on his gut biopsy. Visually, his gut looked perfectly healthy throughout, but pcr's are incredibly sensitive and picked up some residual past or present virus. Given the toxic nature of the treatment, both our dr here and the Seattle doctors don't want to treat at this point. Our Seattle doctor has a child in renal failure because of cidofovir, the drug used to treat adenovirus. Jacob has already had to be on that treatment for several weeks back in June and July when his blood adenovirus count was up to 9 million. For now, it is negative in the blood, respiratory system, and stool, so we are just going to sit tight and hope he can keep it under control. Being off steroids will hopefully help. He gets to start tapering off his other immunosuppressant around September 18th if there are no signs of a gvhd flare.

Because of Jacob's anorexia, we are going home on 16 hours/ day of tpn. It feels like such a huge step backward. With all the diarrhea, disinterest in food, and dependence on tpn, it feels like we are back at the beginning. I have to remind myself of the big picture: Jacob successfully engrafted his new cells, which is the reason we went through all of this in the first place. It's just hard to get to a point where I feel like I can actually rejoice in that because we are constantly having setbacks. Jacob started an appetite stimulator yesterday and ate a little in the morning. We had also been running a very slow formula feed through his ng, but he started complaining of nausea, so we stopped it. Getting food into his tummy seemed to backfire with a day of non stop diaper changes.

Jacob is back to sleep so I'm going to try to sleep some as well while I have
the chance.

Day +140 Still in the Hospital

I was hoping we'd have Jacob home by now, but Thursday afternoon he started having really bad incontinence. I think I changed 25 diapers yesterday. Josh is with him today and it sounds like he's doing about the same. They had introduced clear liquids back into his diet, but with this new symptom, decided to put him back on 100% gut rest.  Jacob had a gut ct scan today and will have an endoscopy next week. Hopefully the problem can be identified so we can get him feeling better. I hope it's not gvhd, because I don't want him back on steroids. That is what causes pneumatosis, which by the way, looked better in Jacob's Wednesday X-ray. Jacob is still in good spirits and looks well despite the setbacks.  All the other tests that have been run so far haven't turned up anything to explain his symptoms.  All his infectious cultures remain negative (except for rhino virus... aka the common cold, which he picked up in the hospital... most likely from a nurse, since I can hear them coughing throughout the day.... argh!), his whole blood chimerism came back 90% donor, which doesn't mean a whole lot to us because we have nothing to compare it to.  We are awaiting the sorted chimerism results which were sent up to Seattle.  Those results will be more significant since we have past results to compare them to.  His bone marrow aspiration preliminary findings are that the marrow is producing cells just like it should.  No specific markers have been identified that would suggest an intolerance to his tacrolimus (immunosuppressant).  They switched his antibiotic with another one, to see if he was having problems with that.  Still no change.  The only stone left unturned is the GVHD issue, which will be answered with the results of his scope next week.

Jacob having some play dough fun with Grandpa Taylor and Aunt Mackenzy

Day +135

Jacob definitely has pneumatosis.  It was identified in two different areas in his intestines.  He has been on gut rest since Thursday night.  He will have an xray on Wednesday to check it again.  If it's starting to look better, he might be able to start eating again.

Another issue is that Jacob's counts have all been trending down lately.  He has continued to need nuepogen in the hospital to have a safe wbc count and he needed a blood transfusion yesterday.  Things that could cause this are: graft failure, medication intolerance/toxicity, gvhd, or an infection.  Blood has already been sent off for an unsorted chimerism which should come back on Wednesday.  If a problem is detected in that result, further investigation of his graft would include another bone marrow aspiration.  That will give us some answers as far as his graft.  He also has further studies currently being processed to check for intolerance to his medication, namely tacrolimus.  He doesn't show any outward signs of gvhd, so when his pneumatosis is controlled enough for him to start eating again, if he has no signs of nausea, abdominal discomfort, or diarrhea, they will probably dismiss that theory.  If he does show any of those signs, however, then they want to proceed with a scope. So far he has come back negative on every type of infectious culture that they've done, so that is probably the least likely culprit.

Three of my Heroes

Day +131 Back in the Hospital

Jacob had to be readmitted this evening because they suspect pneumatosis.  Seattle Children's thought he had the same thing a couple months ago based on an xray.  After a few days of agonizing gut rest, he had another xray and ended up not having it.  But here we are again.  Jacob has been gradually eating less and less and ended up back on ng feeds this week.  He's also been having loose stools and threw up a couple of times early this week and started back on anti-nausea medication.  An xray revealed what they are calling pneumatosis again, so for now he is back on gut rest, meaning he can't take anything by mouth.  It's so hard not giving him food and drink when he asks.  Hopefully further investigation will show that he doesn't have it this time either, but who knows.  There has to be some explanation for his symptoms, but I really hope it's not penumatosis or GVHD.  He finishes his pred taper on Saturday and I was so looking forward to getting him off steroids and immunosuppressants.  His other immunosuppressant is supposed to start tapering in a month.  I hope that plan can stay on course.

This past week Jacob also had to get shots of neupogen in his leg for four days in a row.  His ANC was down in the 300s, so he really needed a big boost of cell activity.  He was very brave, and thankfully, we had a nurse come out to administer the shots.  I really didn't want to have to give him those shots after all the other unpleasant things I have to put him through.

It's frustrating and disheartening in what feels like huge strides backwards.  I am thankful to have my wonderful husband who sleeps in the hospital so I don't have to.  I am also thankful to my in-laws who jumped right in to help with Ethan while we are getting situated at the hospital again.  I am so blessed to have such a wonderful and supportive family.  Ethan was excited to spend the night with them and Jacob was happy to come to the hospital because he wants to play in the playroom again. :)  My boys are so cute.  I can learn a lot from them, such as looking for the positive in any situation.

Please continue to pray for Jacob.  We are clearly not out of the woods yet and there are still a lot of things that could go wrong for him.  Please pray that his stomach will heal so he can eat again and we can go home soon, and that the doctors will be inspired and guided as to the best way to diagnose and treat him.

Day +122

Life has been non stop since getting home from Seattle. Our family reunion celebration was cut short. Saturday morning, Jacob woke up fevered and so I called the hospital to have him admitted. Josh has been doing hospital duty this time to give me a break and a chance to spend time with Ethan. I'm sad that he had to go back in so soon, but grateful to have him near home so we can all visit him daily. They never found the source of the fever, but thankfully it went away and hasn't come back. They are discharging him this afternoon. Also, Jacob's adeno pcr from last Wednesday came back negative! This is such a relief. His white blood cell count has been really low, so he's probably going to need to get shots of gcsf a couple of times a week until he can maintain a safe level. We can administer these at home, but hopefully we can get a home health care nurse to come out and do it. I know J is really scared of shots and I would hate to have to do that to him.

Ethan started first grade yesterday and I was so happy to be there for him. I have missed him so much! I hope he has a great year! He has been such a wonderful big brother to Jacob through all of this and he continues to make us laugh. I'm grateful to have Josh helping with hospital duty so I can focus my attention on Ethan.

 Ethan's First Day of First Grade

Ethan finds his buddy before school starts

We got ice cream after school...

then drove to L.A. to visit Jacob.

Scary dinosaur!

Jacob makes a wonderful doctor.

Day +118 We're Home!

We made it! I can't even begin to start to describe how wonderful it is to be home!

We could not have made it through this arduous separation without the love and support of our family members, our ward family, and our wonderful friends. Thank you to everyone who has helped us through this. Our hearts are full of gratitude.

On Monday, we had our last clinic visit and infusion at the Seattle Cancer Care Alliance. My parents flew in Monday evening to help us pack the car, to drop us off at the airport on Tuesday, and to drive our car home. Besides me being nervous about how crowded the airport was for fear of germs and being keenly aware and tense about every cough and sneeze on the airplane, the flight home went smoothly. Time will tell if Jacob picked up anything or not.

Here is Jacob getting his last infusion at SCCA.

Jacob and I getting dropped off at the airport and saying goodbye to my parents

(who made it home safely last night with the car)

Jacob is SO excited to get home.  Here he is on the plane.

Josh and Ethan picked us up from the airport. The boys were so excited to be back together again. It was such a sweet reunion. 

The boys are back together! Their eyes just sparkle with love for each other.

Jacob and Daddy missed each other!

As we were driving up our street I noticed an unusually large number of parked cars. Suddenly I noticed some people waving and holding signs. As we got closer I realized they were church friends. As we turned the last corner onto the cul de sac, I saw that the whole street was was lined with ward members cheering and waving to us. Through tears I was able to grab the camera and capture a few pictures. Josh rolled down the windows so Ethan and Jacob could wave back. I was overcome that so many people were rejoicing with us. We are blessed to belong to an amazing ward family.

The next several pictures are the ones I took as we drove up to our house.

Jacob and Ethan were so excited with the celebration!  

Jacob proceeded to do several fancy dance moves for everybody. :)

Not only did we have a huge, warm welcome on the street, but I quickly discovered that our whole house had been scrubbed and sanitized from top to bottom. It was immaculate! Josh told me how our family, friends, and ward members had volunteered their time and cleaning expertise. It felt so wonderful and welcoming to walk into a clean home.

Then to top off the perfect welcome home, our ward provided some delicious meals to give us a chance to get adjusted. Thank you so much to everyone who pitched in on the meals and our house.

There were just so many who helped! We appreciate it more than we could ever possibly express. We feel so loved and blessed. Thank you from the bottom of our hearts.