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.

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.

 

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.

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 help4ezra@gmail.com 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.

Days +30 to +37: A Hard First Week at Home

Our first week home has been a challenging one. We had hoped that Ezra's pain would magically disappear once we were in the safety and comfort of our home. This has not been the case at all. Ezra is still in a tremendous amount of pain from his stomach and his legs. He  spends most of his days on the couch crying and whimpering in pain. He is still on heavy duty pain medication. The plan for now is to wait and see a little while longer in hopes that he starts to improve. Investigating his stomach pain further will mean invasive testing, and no one is in a rush to do that. His leg pain is likely a combination of his bone marrow hard at work rebuilding and muscular deconditioning from all the time spent in the hospital. We are working on getting him evaluated for PT, and trying to get him doing more physically each day. Other than that, we feel very helpless in our ability to alleviate his pain. Watching him suffer is wearing us all down.

Getting Ezra used to going to clinic again has also been a challenge. As one of his doctors put it, Ezra has a bad case of "hospitalitis." Very true. Who can blame him? He also has been having anxiety about his port being accessed again. He forgot what it feels like after having a central line. By our third visit this past week, he was getting better at it, and hopefully the whole process will begin to be more routine as time goes by.

On a positive note, Ezra's counts have been stable, and he has been able to avoid needing the drug to stimulate neutrophils this past week, which is great news. His platelets and hemoglobin have also been good and he has not needed transfusions in a while. We thank each of you who donated blood or platelets from the bottoms our hearts. You have all played a critical role in Ezra's healing, and we believe there is a little part of all of you inside of him. Please consider donating again in the future as there is still a floor full of other children in need of blood and platelets.

Despite the overwhelming pain, we've gotten Ezra to spend short bursts of time outside in this glorious weather. Watching him rediscover his swing set (a/k/a "Ezra's Park") was joyous. A huge smile spread across his face with that first push of the swing. He was so happy he started humming and singing. It felt like each swing was chipping away at the gray days of the hospital. We watched him approach his slide with trepidation and then rejoiced when he reached the bottom and shouted triumphantly "let's do that again!"

Playtime is short as Ezra is weak. He lost a substantial amount of weight during the transplant process. He is eating, but with the pain he is feeling, his appetite is not back to normal. Transplant patients require more calories to support all the re-building of cells and tissue that has to happen. Between that and his pain, eating is a focus and a challenge. The days are spent getting Ezra to eat, take his meds, and attempting to alleviate his pain as much as we can.

Chimerism will be checked again soon - likely this week - so please pray that he remains 100% donor cells. And that he gets some relief soon from the pain.

Days +26 to +29: We Are Home!

To cheers and a standing ovation, Ezra Jordan Fineman, for the second time in his young life, slowly walked himself out of the pediatric bone marrow transplant unit at Sloan-Kettering yesterday. Yes, we are home! We've known for about a week that discharge was on the horizon, but we had no idea of the timeframe the doctors had in mind, and it was all day by day depending on how Ezra was doing. Then suddenly it was you're out of here, pack your bags, adios! In the past few days, Ezra turned a corner and his appetite kicked in and he started eating more, drinking lots and maintaining his electrolytes without IV fluids. That was the sign the doctors were looking for to know he will be ok at home. So here we are.

We still can't believe we're home. Last year we weren't discharged until Day +66. This time it is Day +28. A world of difference.

Discharge day was busy and chaotic with last minute meds and packing. And then came the part we were most nervous about - Ezra needed his central line pulled out. We will now use his mediport for labs and medications. Ezra was traumatized by the last incident when the line broke and has been having nightmares about his central line, so we were very concerned about doing it again. But with the help of his fabulous friend Jessica from child life, he did amazingly well. Please, please let this be the last time we ever have to think about a central line. 

When we first arrived home, Ezra was in a fog of pain, but slowly the fact that he was home settled in and we watched with joy as he ran from toy to toy as if we had let him loose in a toy store. The house feels so bright and clean and the air outside smells beyond fresh. The best part is the quiet - no beeping pumps, vitals all night long, or linens collectors slamming the door open early in the morning. Ah, home.

We still have a not-so-healthy child on our hands. Ezra has only the beginnings of an immune system and remains extremely susceptible to infection. His counts have been low lately and dependent on the drug that stimulates neutrophils. He is also still in pain from his stomach and legs. He remains on pain medication and the hope is once we are settled at home, the pain will begin to subside and we can wean him off the pain meds. 

Ezra will be watched very closely, so closely that we are going back to the hospital tomorrow for a counts check and any necessary meds. Then we will be at clinic at least three times a week. At the first sign of fever or any other issue, he will be re-admitted. Hectic, but we'll take anything as long as we can sleep in our own beds! 

We are grateful to the doctors who have successfully gotten Ezra this far and to the fantastic nurses of M9. Ezra's nurses can best be described as caring, compassionate and creative, with a sprinkle of silliness. They did an amazing job caring for Ezra last year, but this time around, the care was even more seamless because they knew Ezra and his particular ways. They got him (and us) through very tough days in the best possible ways and even made him laugh. The fact that they clearly earned Ezra's trust says it all. We hope to see you again only on the outpatient side!

Last year our homecoming was filled with fear and disappointment as we knew the transplant did not go well. This time, we are allowing ourselves a little bit of hope that things will continue to go well, and in the upcoming months we will see new healthy T cells. As we were sitting in traffic on the FDR on the way home, Ezra was chatting away about all the landmarks he loves to look at during our trips back and forth to the hospital, and he started talking about the bat outside Yankees Stadium. For the first time, we thought maybe, just maybe, he will get to go to a baseball game in the future. Maybe not this year, but it no longer feels like never.

We will continue to keep updating as we enter the next phase of this very long journey. Please continue to pray that Ezra remains infection free, that no GVHD develops, and that his new immune system continues to grow. Thank you to everyone for your support - you have carried us through these dreadful days and we know you are behind us as we continue the fight for Ezra's cure.

Days +22 to +25: Baby Steps

The past few days have been filled with more ups and downs. Last Friday night, the transplant team decided to stop his IV nutrition, which is ultimately a good thing because Ezra has to be eating and drinking on his own in order to go home. The transition to oral intake, however, is difficult and there is a lot of pressure for him to do a lot of drinking (the medical goal is way more than you would expect for a 4 year old) and eating when he still doesn't feel well. The weekend was very rough, and although Ezra was trying, his stomach did not seem to be ready to return to eating and drinking. 

Thankfully, yesterday he seemed to have turned a corner and was able to eat small amounts of food and keep it down. He has also been drinking as much as he can. Hopefully, we are on the way to getting back to a normal diet, as long as that tummy cooperates. Always the trooper, always the fighter.

Ezra's counts are still bouncing around quite a bit. We understand that this is normal at this stage, but it still makes us nervous. Ezra is still very early in this process and we're in it for the long run, but given our prior experience we are grasping for as much reassurance as possible.

We're feeling some sadness that Ezra will be missing sukkot this year. He loves being outside in our sukkah. We are just hoping that this is the last sukkot spent in the hospital.

September is childhood cancer awareness month, and the subject has been on our minds. While Sloan treats diseases of many different types, the majority of patients are cancer patients. Sometimes it is so crowded here that you start to think that every child has cancer. Certainly in the abnormal world we live in, we see more sick children than healthy ones. We have witnessed miracles happening here, and we have seen the devastation caused by pediatric cancer. When a medical code is called for the Peds floor, our hearts sink and we try to pretend that we don't hear the doctors and nurses running down the hall and the machines ringing, and we try to think that everything is ok, when really nothing is.

Some of you may know the shocking statistic that only 4% of federal cancer funding goes to pediatric cancers. Children aren't just mini adults and shouldn't be treated that way. Their bodies react differently and treatments should be specific to pediatric cancer, and not just shrunk down versions of treatments for adults. There are many excellent charities that fund pediatric cancer research. We don't have a favorite one, but certainly Sloan-Kettering is one of the places making great strides in the treatment of pediatric cancer.

One of the many things we have never figured out about this place is why there are only plastic spoons in the pantry. You can certainly get utensils from food service, but many families store food in the pantry refrigerators for their child or themselves. It is obviously very difficult to prepare food with just a spoon. And when your sick child wants something to eat pronto, you don't want to wait on food service. So, we decided to take matters into our own hands and bought a case of 1000 individually wrapped plastic forks from Amazon and have secretly deposited a batch in the pantry and will continue to refill. Our little contribution to making life slightly easier around here. Shhhh...don't tell!

Wishing everyone a chag sameach!