Looking Better

Things settled down quite a bit for Carly near the end of last week and over this weekend. We were definitely worried that she was on her way toward a shunt revision, but her symptoms have improved and she is much more comfortable now.  On Thursday she smiled at least six times, which is more than we have seen in a single day in a really long time and she is looking like she feels better.  Her blood cell counts will be checked tomorrow to see how her pancytopenia is progressing, and we will continue to keep a close eye on her to make sure her shunt continues to work. I am sure all of the love and prayers that are coming her way are helping her though this.

Love, Brad

Keep It Flowing

There haven't been too many changes over the last week. The best news is that Carly's cell counts have stayed pretty stable since her platelet transfusion last Wednesday. A check today showed that both her red and white blood cell counts have gone up, and although her platelet count has gone down a bit it hasn't been a rapid drop. The shunt tap last Wednesday showed that the protein content in Carly's CSF has not gone down over the last few weeks, and it could take several months to normalize. Unfortunately one potential complication from high CSF protein levels is shunt blockage. Carly has continued to be pretty uncomfortable over the last week, and the signs look a little bit like those that we have seen with previous shunt failures. We will be in contact with Dr. Gupta over the next few days to determine if a shunt function study is needed, and if her symptoms worsen he may opt for a shunt revision surgery without the study. Through it all Carly remains a sweet and adorable little fighter.

Love, Brad

Limited Access

Carly's platelet count slowly decreased over the last week and she finally got to the point that she needed another transfusion today. It has been two weeks since her last platelet transfusion, and the fact that she was able to last that long is encouraging that her bone marrow is doing some work. The transfusion itself was straightforward, however getting IV access was a big challenge as usual. It took many needle pokes, but the nurses were finally able to get an IV in and Carly got her platelets and some IV fluids. Once her platelet count was back to a safe level neurosurgery tapped her shunt again to see how the protein level is trending to determine if any additional treatment is necessary. We should have the results from that test tomorrow. Carly is still pretty uncomfortable, but we are hopeful that some answers will reveal themselves in the next few days. Of course, we are more than happy to have no answers as long as Carly starts to feel better. As always, your love and support is uplifting for Carly, Christa and I.

Love, Brad

Wait And See

Carly's blood labs looked more stable than expected, so we are holding off on the chest port for now. Her platelet count did go down again but not as quickly as it would have if she were not producing any on her own, so it is a good sign that her bone morrow is doing some work. The full biopsy results are still pending and Carly will have another blood lab on Monday to see how she is progressing.

Carly started to show some signs yesterday that we have seen before when her shunt has started to fail. She is uncomfortable and rocking her head a lot and yesterday she wasn't very interested in eating. We were afraid that the night would be worse and that we may have to go in today for a shunt study, but she had a good nights sleep and is eating pretty well this morning. She is still very uncomfortable, but we will keep a close eye on her and hold off on the shunt study for now.


Love, Brad

One Day At A Time

Carly has been a bit uncomfortable over the last few days, but she has been able to steer clear of the hospital for now. Her labs on Monday showed that her platelet levels are slowly going down again, but not as quickly as the hematology team thought possible. Carly will have another check on Friday and if the cell levels are deteriorating quickly she will have surgery that afternoon to place the chest port. If the levels have stabilized we may put that surgery on hold.

We met with the endocrinology team today for Carly's one year tumor free check-up and to discuss growth hormone replacement. Based on Carly's last MRI Dr. Lustig is comfortable beginning this treatment, but he wants to wait until Carly's recent blood issues have settled out.  It may take a few months, but we should be able to start her growth hormone replacement shortly. Thank you for keeping Carly in your thoughts and surrounded by healing energy.

Love, Brad

Happy Easter

It was wonderful getting to spend Easter and my birthday at home, rather than in the hospital. Carly is feeling a little better today and she even managed to smile three times, which was the best birthday present I could ask for. She will have some blood labs tomorrow to check her progress and we'll be sure to let you all know how that goes. 

Love, Brad

Back Home Again

Carly’s blood counts looked a lot better today after her transfusion, enough so that they were willing to let us go home. I did not expect that we would be discharged this soon, but the hematology team thought that we could care for Carly at home while we wait to see how her body responds over the coming days.  Carly will need to have her blood checked on Monday and if her cells are deteriorating quickly we will be admitted back to the hospital, but the time will be a lot more restorative for all of us at home.

We are planning to have a chest port placed in Carly at some point this week when pediatric surgery has available OR time.  The port will be a small bump under her skin on her chest and it will provide a spot to draw blood and administer fluids, blood products and medications when needed.  There have been so many problems getting IV access in Carly over the last year that this will be a big help, and should she need many blood transfusions over the coming weeks the port will make the process much easier on Carly. It always feel great to get home, and we can feel the support of Team Carly lifting us up.

Love, Brad

Strong Willed Women

Carly's bone marrow biopsy went smoothly without any complications. The preliminary results came back quickly and she does not have leukemia which is a big relief. The results were not normal though, her marrow showing almost no sign of any cell production. There is no clear explanation for this and once again Carly has the team here at UCSF guessing. It will be a few days until more detailed results from the biopsy are available, but they may not provide an answer either.

The running theory is that a virus is affecting Carly's bone marrow and the marrow may have been further compromised by a seizure medication that Carly took a few months ago. Carly is getting a blood transfusion now to bring her blood cell levels back up to normal range and they will check again tomorrow to see if the cell levels are stable. If they are, and if Carly is doing well otherwise and maintaining her blood oxygen levels without the nasal cannula that she is using now, then we may be allowed to go home.  Carly will need to have her blood levels closely monitored for several weeks and she will probably need to have some transfusions along the way to keep the levels where they need to be.  Hopefully her bone marrow will rebound on its own and we will be able put this one behind us.

On the seizure front Carly only had one today which is an improvement from the six she had yesterday. There is still no explanation for them, but the stress that Carly's body has been under is enough to bring them back. We continue to hope that these too fade away once Carly is feeling more like herself.

I feel like there is an extra strong presence watching over Carly tonight, as my grandmother "Grammy" passed away today.  Grammy was 97 and she was an incredibly strong woman, fighting for these last weeks and defying all expectations down to the very end. She was ready to go, and I am thankful that she went peacefully while my parents kept her company.  It is no question where Carly got some of her fighting spirit. I won't forget the look on Grammy's face when she first held Carly, and I know she is keeping an eye on Carly now.

Love, Brad 

No Fooling

We had a pretty late night at the hospital yesterday, but after many attempts they were finally able to get an IV into Carly to give a transfusion of platelets to bring this level back into normal range.  A chest x-ray showed that Carly has what looks like a little pneumonia so they also started antibiotics late in the night.  We squeezed in a few hours of sleep in the room with her and Carly was finally able to get some rest herself.

Today has brought many new questions. Carly’s blood labs have shown that her bone marrow is not making enough blood cells or platelets. This can be a result of a number of viruses and if that is the case Carly’s body will just need some time to fight off the virus. The other possibility, which the oncology team sees as very unlikely, is that she has leukemia. They believe that this is probably not the case, but due to the severity of this disease they will perform a bone marrow biopsy tomorrow afternoon to verify that this is not the cause of her blood cell issues.  Carly will need to be under anesthesia for the biopsy but the procedure only takes a few minutes and we should get preliminary results pretty quickly. 

The last issue of the day is the return of Carly’s seizures.  She had been seizure free since December, but early this morning she had a short episode and she has had a few more over the course of the day.  We had hoped that we had put them behind us for good, but because Carly’s body is under a lot of stress she is susceptible to a recurrence. There are a lot of potential explanations for the seizures and as of now we are waiting for Carly to feel more like herself to see if the seizures just fade away with the other symptoms. Carly is a strong little fighter and she is surrounded by love and I am confident that she will overcome these new obstacles. Thanks for your continued love and support.

Love, Brad