Monday, October 28, 2013

Days +59 to +66: Rock Star

Ezra made it through yet another challenge like a rock star on Friday. Although we have seen improvements with his stomach and leg pain, the doctors still really wanted to perform the PET scan because he is still having enough pain that there is reason to be concerned. We were so worried that putting him through another round of testing when he is already traumatized by the hospital would make everything worse. But Ezra never ceases to amaze us and he rocked the test like it was no big deal. There was a lot of back and forth about whether he would need anesthesia in order to get through the test, but we knew once we saw his calm reaction when we explained the test to him the night before that he would be fine. Sure enough, he stayed perfectly still and followed all instructions, despite being very tired from an early wake-up call and very hungry from fasting until 2:00 when the test was finally over. He took the instructions not to move so seriously that he held in his laugh before the test even started when Bert photobombed this picture!  It also helped that the machine was called "Discovery" like his second favorite space shuttle and there was a "countdown clock." Somehow Ezra made it more like a ride than a scary test. The most disturbing part for us was being handed a card that said our son would be radioactive for the next 48 hours. Scary stuff.

Thankfully, the results of the scan did not show anything problematic. The assumption is that the leg pain is from engraftment and deconditioning of the muscles and tendons, and the stomach pain is likely left over irritation from the chemo and mucositis. We are working on getting a physical therapy plan in place. He may have a slow recovery ahead of him, but as long as he moves in the right direction, then we are fine with him taking his sweet time.

We have thankfully seen more improvement. He had a good week with less pain, although some days are better than others. More energy, more playing and more giggles. The other night he ran down the hall yelling "I'm really wired tonight!" Um, yes he certainly was!

We have been able to reduce the oral pain meds and he has tolerated the decrease so far. We will hopefully be able to continue to slowly decrease the pain meds as he improves.

Ezra's hair has been falling out again over the past couple of weeks and has gotten thinner. We are hoping it is a sign that new hair will start to grow soon. With the first transplant, his hair started growing back around this time post-transplant, but no signs of new hair yet. It will be nice to finally watch new hair grow in instead of watching old hair falling out. 

It is also incredible to think that we had just been discharged on this exact day (+66) after the first transplant. This time around, we have already been home for over a month. Although it has been an extremely difficult first month home, we are so grateful to not be in the hospital. We are trying our hardest to keep Ezra healthy in hopes that we can keep him home from here on out.

Sunday, October 20, 2013

Days +50 to +58: Roller Coaster Ride

We've reached our fourth week of being at home and Ezra continues to struggle with pain. Although we had seen improvement, Ezra regressed at the beginning of last week and was having more pain. Two steps forward, one step back. Then mid-week he started to do better again. This past Friday evening, all of a sudden, Ezra was back. The real Ezra. The pre-transplant, spirited, energetic, space shuttle launching, chatty Ezra. We exchanged looks with each other, asking "where did this kid come from?" We would have cried if we weren't so busy having fun. We were so hopeful that Saturday morning the real Ezra would still be with us, but sadly the post-transplant Ezra was back. 

It has been an exhausting roller coaster ride. While the years of struggling with Hyper IgM and transplant have taught us to never think ahead and take each day as it comes, it has been very difficult to not be anxious over whether each day will be a "good" day or a "bad" day. 

We spent the past week having discussions with multiple doctors, nurses, pain specialists, psychologists and child life in an effort to get a better plan in place for dealing with Ezra's pain. We decided to wean him off his pain patch, which he has had since discharge.  Lately, we haven't been convinced that it is doing much to help his pain and may be doing more harm than good at this point. We removed the patch yesterday and are following a schedule of oral pain medication to make sure he doesn't go through withdrawal. So far he hasn't shown any symptoms of withdrawal. In fact, he had a great day today, but we can't quite tell if he is doped up from the increased oral pain meds or he is truly feeling better. He was feeling so good today that he asked to go to the park. A quiet playground and gloves on made for good, clean fun for everyone! Pure bliss for Ezra. We are hopeful one less pain medication will help get his stomach back in shape and might bring some of his personality back. 

If he is still having significant pain, then he is scheduled for a PET scan at the end of the week to make sure the doctors aren't missing an issue that needs treatment. We are concerned about putting Ezra through more trauma and more radiation with additional testing, but if he doesn't improve, we need to be sure something more sinister isn't lurking inside.

Counts are still steadily increasing, which is great. We are hoping that all this pain is just his marrow chugging away and rebuilding and will soon subside. And that the real Ezra will return to us soon full time.


Friday, October 11, 2013

Days +44 to +49: Liking the Cells, But Not the Pain

First the really, really good news: Ezra's chimerism test shows that he is still 100% donor! We are so relieved and thrilled! After hearing the news, we feel the urge to share this incredible news with Ezra's donor, the person whose cells have found a new home in Ezra's body. For now, we'll just keep saving up our excitement and hugs for some day in the future when we will hopefully meet.

The tests show that Ezra does not yet have T cells, but it is too early for him to have T cells at this stage post-transplant and for the type of transplant he had. He does have B cells and NK cells now, which is exactly what is be expected. So all good on that front.

The other small piece of good news is that we are seeing small improvements in Ezra. All infection tests were negative. He is complaining less about his stomach, and his appetite has been a little better. Leg pain is now his primary complaint and he continues to be on a significant amount of pain medication. The past week brought some improvement. He has been able to play a little more and even ran up our stairs, which he hadn't been able to do the weeks before. He still spends chunks of the day in pain, but we are seeing more glimmers of himself breaking through. 

Clinic visits have still been a challenge. It is clear that Ezra is having post-transplant trauma. After all he has been through, it is no surprise that being back at the hospital is very upsetting for him. Someday we hope visits to Sloan will be only a yearly occurrence, but that day is far away right now, so we are doing the best we can to make the visits tolerable. We are also working with the child life staff to figure out how to make clinic visits less traumatic.

Ezra had a special treat this week - his beloved teacher, Mr. Pete, returned. Ezra had started home pre-school instruction this past Spring, which he loved. We saw the biggest smile spread across his face since we started this process when we said Mr. Pete was coming back. His visits are a very welcome distraction.

Now that we know those wonderful donor cells are still growing inside Ezra, we are even more determined to get him back to a place of good health and strength. Day by day.

Saturday, October 5, 2013

Days +38 to +43: No Improvement

Unfortunately, Ezra has not improved as we had hoped. In fact, his pain is worse. It has been a very difficult week. Ezra has spent much of the days screaming and crying in pain from his stomach and legs. It is devastating to watch him suffer. His sweet face is twisted and contorted in pain. There are very few glimmers of our fun-loving, spirited, sweet boy. We keep hoping he will wake up one day feeling better. It has yet to happen. His doctors at Sloan have now realized how severe his pain is and have been running more tests and making adjustments with his meds. 

Yesterday was a particularly difficult day. We were at clinic and the doctor saw the intensity of Ezra's pain, and was concerned. We finally got home after a long day when the the phone rang and it was the doctor saying they wanted some more labs drawn ASAP. They had all conferred and were concerned that Ezra may have an infection in his blood, even though he is fever free and otherwise shows no sign of infection. Instead of having us drive back to the city, it was decided that we would go to our local hospital for the labs. Many, many hours later we finally arrived back home at 11:30 at night with an unhappy Ezra. The tests for blood infection take several days to be final. So far, nothing has showed up. A blood infection would be very bad. We are praying that is not the cause of his pain.

It may be that the pain is from his continuing engraftment. And that we are seeing the cumulative effects of two transplants. We will continue to investigate and hope that the changes in his medications will make a difference. 

On a positive note, his counts have remained steady. Chimerism tests were sent yesterday and we should have the results by the end of this week. Prayers that the suffering is not all for nothing and that growing donor cells are the ones causing the pain.

The overwhelming showing of support for Ezra for tomorrow's Gift of Life Walk for Life has been a bright light in these dark days. The two teams walking and running for Ezra are 60 people strong and over $22,000 has been raised for Gift of Life. We feel so honored and privileged that Ezra's story continues to inspire people to support the need to process more donor test kits so that more children and adults can have a second chance at life. 

We are also so grateful for the gifts that have continued to arrive at our doorstep for Ezra. Lately, they are the only things that bring a fleeting smile to Ezra's face. We received some gifts at the Ronald McDonald House that didn't say who sent them. If you haven't heard from us, please send us an email at so we can thank you appropriately! 

We are keeping up the fight to get our Ezra back - and hopefully, it will be a new and improved Ezra with a healthy immune system.