Home again
By Barbara Anderson — Mar 8, 2015 9:52pm
Just a quick note to say that we are home again and enjoying our time as a family. Jude is doing great and he is continuing to reap the benefits of being on the Blinatumomab vs. regular chemotherapy. With the new medication being more specific (targeting cancer cells vs. all fast growing cells), his counts only dropped a little vs. having his immune system decimated for weeks on end. In fact, before we were discharged, the doctor gave us clearance to go on limited social outings! This would not have been possible on chemo so I'm determined to make the most of this blessing. We started out by celebrating Aidan's Army promotion today and Jude pinned (velcroed) Aidan's new rank on him; it was really special that Jude could do this.
The only drawback is that the continuous infusion and PICC line is kind of a pain, especially for someone without medical training like me. Its definitely worth the trade off, but the lines just require a lot of supervision and making sure they don't caught on stuff as he plays. And Jude has to keep the infusion bag with him constantly. Aidan bought him a super cute little Camelback backpack to hold the infusion bag that Jude likes. Thankfully, Jude is such a patient, mature guy so he makes it seem easy. The PICC line is pretty secure in his upper arm - its held in place by stitches and then a strong bandage over it, but I'm still nervous its going to pull out in some horrifying way. Anytime Jude puts on a shirt (except for the amazing special PICC line shirts that my friend, Rachel and her Mom, Alberta, made for Jude - so grateful for their work) requires me to pause the infusion, disconnect the lines and then reconnect them after the shirt is on. This is a bit daunting because it requires precision and attention to cleaning the connection to prevent against a line infection which could be very serious. (on the positive side, I will be way ahead of the class if I ever go back to school for nursing!)
The plan from here is that we have to go back every 48 hours to change out the medicine. I don't love going to the hospital that often, but it will be nice to have the nurses check the PICC line and get their reassurance that everything looks okay. This Wednesday Jude has another triple-drug spinal tap. Because he relapsed in his spinal fluid, he gets stronger treatment in the spinal fluid. Hopefully this goes okay - this was the same drug combo that caused him so much agitation and pain after the first one, but he handled the next couple ones just fine. He gets 4 of these as part of Blocks 2 and 3.
Before I end this post, I just wanted to mention something I heard from Jude's oncologist. She told me that the study Jude is on to further research the effects of Blinatumomab had to close due to lack of funding for the drug. Its very expensive and the Children's Oncology Group pays for it as part of the study. I am so grateful for her hard work in getting Jude on the study so quickly and glad that he got in before it closed, but it is upsetting to me that research is being delayed for this drug which holds so much promise for kids with leukemia (the most common form of childhood cancer). As many of you probably know, there is a serious lack of funding for childhood cancers and this is a real-life example of it. There are a couple great charities that specifically fund childhood cancer research (many charities give little or nothing to childhood cancer research which is often very different from its adult counterparts). One of those is St. Baldrick's (http://www.stbaldricks.org). If any of you want to donate to help fund research, I would encourage you to take a look at this one, or donate directly to Children's Oncology Group (http://www.childrensoncologygroup.org). Also, you can look up head-shaving fundraisers for St. Baldrick's in your area and participate in one. Special thanks to Jude's buddy, Eli, and his dad, Hayden, for participating in one this weekend. We are honored at their kindness (and they look pretty handsome with the same haircut as Jude!).
That's about it for now. I want to give a special recognition and hello to my grandparents who recently started visiting this page via their iPad. I am beyond impressed at their ability to access this page and read the updates. Way to go, G+G! We love you.
The going home plan
By Barbara Anderson — Mar 5, 2015 6:27pm
Okay! The plan to go home and take our Blinatumomab with us is in place, hooray. I'm really grateful for the hard work of our oncology team including the oncology floor nurse manager, Kris, to get all the details set. As I hinted at in my last journal, there were a bunch of moving pieces that had to come together to make this happen. Since a couple of you asked, with Blinatumomab being such a new drug and in the same class as chemotherapy, it isn't something that can be dispensed and handled by home health nurses. It has to be administered by a chemo-certified nurse and signed off in the presence of another chemo-certified nurse. This was just one of the many details that made the discharge plan tricky. But Kris did it - hopefully this paves the way for a really smooth discharge for the next patient who gets on this study at UMC.
The plan is for Aidan and me to get trained on the take-home pump tomorrow afternoon, switch Jude over from the hospital IV to the home pump after the training and then spend one last night here just in case anything funny happens. Then we'll go home on Saturday morning.
At one point last week before Jude started the drug and when I was totally scared of the side effects, I almost opted out of the study, which would have meant more of the same nasty chemos for Jude. Now that we are a week into this, I am really happy that we took the leap of faith and decided to try this drug. He is doing great. Aside from the brief scare with the fever and the inconvenience of having to get a PICC line, everything has been pretty smooth sailing. Compare this to the chemo regimen, which would have included LOTS of side effects - the ones we know to expect - mouth and GI tract sores, heavy doses of steroids, lots of pain, and then all the super scary side effects - seizures, threat of deadly infections, neurotoxicity. With the Blinatumomab, Jude's counts have dropped (ANC is hovering in the 200-300 range), but not dropped to and remained at 0, as they would have with chemo. The doctor told us to expect the ANC to stay low for another week, but after that, it will hopefully rise a bit. I'll still probably be very cautious with Jude with transplant time coming so we can avoid any viruses that might linger, but hopefully we can do some less intense outdoor activities at not crowded times.
That's about it for now. Thanks for everyone's good thoughts and prayers; they were definitely felt during the challenging times last week.
And I just wanted to do a special shout out for our wonderful team of Finn babysitters over the past week. You have been a lifesaver so that Aidan can still work and save his leave hours for transplant time. We couldn't have made it through this stay without all of you. Thank you so much!! We are humbled and grateful.
Latest Journal Update
About 1% done with Blinatumomab, so far so goodBy Barbara Anderson on 2-26-15
Its funny how at the end of a day in the hospital, it feels like such a long day full of making tough decisions, consulting with the oncology team and entertaining an agitated, steroid-ed out toddler, yet when I sit down to write this, it is hard to specifically list the product of all this work. That's how I would describe the past 36 hours or so that have passed since we showed up at the hospital. I will try to summarize.
When I posted earlier this week, I was excited about the experimental arm of the study and Jude getting to try Blinatumomab. But then I read more about the side effects which scared the heck out of me so by the time Jude and I arrived at the hospital on Weds, I wasn't sure what to do. (we always have the option to get off the study and pursue the traditional treatment) Then once we got settled on the 6th floor, I found out that Jude would need an IV line in his arm, as the Blinatumomab runs for 28 straight days continuously (= all day/all night/no stopping it). If the drug is running continuously, then another line would need to be started for blood draws and meds. (this is compared to the chemos, which run for shorter times so his port is only used briefly throughout the day and available for other medications and blood draws) As those of you who have ever had an IV line started, it isn't exactly pleasant. When you factor in small toddler veins and the possibility of needing to re-do the line every few days, this added up to potentially lots of uncomfortable pokes for Jude. This just added to my anxiety about trying Blinatumomab and I was a nervous, stressed mama bear. We are fortunate that the attending oncologist and program director took my concerns very seriously and made time to speak to Aidan and me at length about our list of concerns and also take the time to develop a plan to avoid the IV pokes.
In our decisions, we kept coming back to the pros in favor of the experimental drug - the promise of something that might work better, the great results it has shown in other patients so far, avoiding the painful chemo side effects and keeping Jude's body stronger and in better shape for transplant time - all while adding to the science and research in finding a cure for this disease. As for avoiding the IV pokes, they recommended starting a PICC line (peripherally inserted central catheter) which can be placed and then accessed throughout the next few months, thus avoiding numerous IV pokes and blood draws. Even though it doesn't sound like much on paper, these two things took up a lot of decision making and planning for the past day.
With hopeful hearts and minds, we chose to continue with the experimental drug, despite the risk of a possible ICU trip if Jude's body reacted badly to the drug. But the doctors reassured us there was a plan in place and pre-treatment to hopefully avoid the symptoms. With our confidence in the team and plan, we proceeded forward.
So this morning Jude got his PICC line placed - I'll spare you the details but I'll summarize that while the procedure went well, I will try to avoid further visits with Jude to medical imaging - not the most kid-friendly or best for immune-compromised patients (hah, long story short - at least upon my request, we didn't have to wait in the same small waiting room as a bunch of sick people including an inmate accompanied by 2 Sheriff's Deputies - real fun).
After we got back from our fun trip for the PICC line, Jude started the Blinatumomab at around 2:30. Because patients usually have a reaction in the first few hours, Jude was monitored frequently and we checked in with the attending oncologist every hour or so and then more frequent visits from our amazing nurse. We all waited with bated breath for any sign of a reaction - fever, chills, confusion. Fortunately... nothing! Just lots of agitation and grumpiness from being woken up from the sedation used in the PICC line procedure and the steroids for pre-treatment. It didn't make for a fun evening, but at least the problems weren't from the drug.
So that brings us to now - Jude is sleeping peacefully and the Blinatumomab goes on. As I mentioned, it goes continuously for 28 straight days. 28 days x 24 hours a day = 672 hours. With 8 hours down, we are just over 1% done, although these first few hours were a big hurdle to cross. Keep those positive thoughts and prayers coming for Jude continuing to tolerate the drug well and a smooth day tomorrow!
Oh and PS - just in case anyone worries that we aren't having enough fun even with the tough decisions and all, a couple fun things to report. Yesterday, Jude got to be in the Diamond Children's/Steele Children's Research Center video with the UA Pom Squad. He loved it and the women just about melted when he said "Go Cats! Bear Down!" to them. I can't wait to see the video in the next month or so. And then today Jude made a friend in the hallway. It was super cute - an adorable and very kind boy named Jack that is almost 6. He hung out with Jude in the room for a bit and they bonded over both having ports, liking Star Wars and playing their iPads at the same time. Fortunately Jack was only here for a short stay and went home today so he can enjoy Rodeo Break (yes, non-Tucsonans reading this - kids in Tucson get 2 days off for Rodeo Break!) :) Jack's mom and I connected and hope to get the boys together to play in the future.
About 1% done with Blinatumomab, so far so goodBy Barbara Anderson on 2-26-15
Its funny how at the end of a day in the hospital, it feels like such a long day full of making tough decisions, consulting with the oncology team and entertaining an agitated, steroid-ed out toddler, yet when I sit down to write this, it is hard to specifically list the product of all this work. That's how I would describe the past 36 hours or so that have passed since we showed up at the hospital. I will try to summarize.
When I posted earlier this week, I was excited about the experimental arm of the study and Jude getting to try Blinatumomab. But then I read more about the side effects which scared the heck out of me so by the time Jude and I arrived at the hospital on Weds, I wasn't sure what to do. (we always have the option to get off the study and pursue the traditional treatment) Then once we got settled on the 6th floor, I found out that Jude would need an IV line in his arm, as the Blinatumomab runs for 28 straight days continuously (= all day/all night/no stopping it). If the drug is running continuously, then another line would need to be started for blood draws and meds. (this is compared to the chemos, which run for shorter times so his port is only used briefly throughout the day and available for other medications and blood draws) As those of you who have ever had an IV line started, it isn't exactly pleasant. When you factor in small toddler veins and the possibility of needing to re-do the line every few days, this added up to potentially lots of uncomfortable pokes for Jude. This just added to my anxiety about trying Blinatumomab and I was a nervous, stressed mama bear. We are fortunate that the attending oncologist and program director took my concerns very seriously and made time to speak to Aidan and me at length about our list of concerns and also take the time to develop a plan to avoid the IV pokes.
In our decisions, we kept coming back to the pros in favor of the experimental drug - the promise of something that might work better, the great results it has shown in other patients so far, avoiding the painful chemo side effects and keeping Jude's body stronger and in better shape for transplant time - all while adding to the science and research in finding a cure for this disease. As for avoiding the IV pokes, they recommended starting a PICC line (peripherally inserted central catheter) which can be placed and then accessed throughout the next few months, thus avoiding numerous IV pokes and blood draws. Even though it doesn't sound like much on paper, these two things took up a lot of decision making and planning for the past day.
With hopeful hearts and minds, we chose to continue with the experimental drug, despite the risk of a possible ICU trip if Jude's body reacted badly to the drug. But the doctors reassured us there was a plan in place and pre-treatment to hopefully avoid the symptoms. With our confidence in the team and plan, we proceeded forward.
So this morning Jude got his PICC line placed - I'll spare you the details but I'll summarize that while the procedure went well, I will try to avoid further visits with Jude to medical imaging - not the most kid-friendly or best for immune-compromised patients (hah, long story short - at least upon my request, we didn't have to wait in the same small waiting room as a bunch of sick people including an inmate accompanied by 2 Sheriff's Deputies - real fun).
After we got back from our fun trip for the PICC line, Jude started the Blinatumomab at around 2:30. Because patients usually have a reaction in the first few hours, Jude was monitored frequently and we checked in with the attending oncologist every hour or so and then more frequent visits from our amazing nurse. We all waited with bated breath for any sign of a reaction - fever, chills, confusion. Fortunately... nothing! Just lots of agitation and grumpiness from being woken up from the sedation used in the PICC line procedure and the steroids for pre-treatment. It didn't make for a fun evening, but at least the problems weren't from the drug.
So that brings us to now - Jude is sleeping peacefully and the Blinatumomab goes on. As I mentioned, it goes continuously for 28 straight days. 28 days x 24 hours a day = 672 hours. With 8 hours down, we are just over 1% done, although these first few hours were a big hurdle to cross. Keep those positive thoughts and prayers coming for Jude continuing to tolerate the drug well and a smooth day tomorrow!
Oh and PS - just in case anyone worries that we aren't having enough fun even with the tough decisions and all, a couple fun things to report. Yesterday, Jude got to be in the Diamond Children's/Steele Children's Research Center video with the UA Pom Squad. He loved it and the women just about melted when he said "Go Cats! Bear Down!" to them. I can't wait to see the video in the next month or so. And then today Jude made a friend in the hallway. It was super cute - an adorable and very kind boy named Jack that is almost 6. He hung out with Jude in the room for a bit and they bonded over both having ports, liking Star Wars and playing their iPads at the same time. Fortunately Jack was only here for a short stay and went home today so he can enjoy Rodeo Break (yes, non-Tucsonans reading this - kids in Tucson get 2 days off for Rodeo Break!) :) Jack's mom and I connected and hope to get the boys together to play in the future.
Bone marrow match updateBy Barbara Anderson — 5 hours ago
Happy Friday all! Jude conked out after a busy morning of playing and running around the hospital halls so I'm taking a brief second for an update. The good news is that for the most part, the "old Jude" seems to be back. No more steroid side effects or strange agitation/pain from the triple drug interthecal (spinal fluid) chemo. He's been happy and silly and tearing up the hospital hallways on his scooter. Yay for that! Unfortunately, Jude's ANC hasn't gotten the message. Today's ANC took a dip down and is at 32. For right now, its nothing to be concerned about - sometimes ANC recovery just takes a while longer and Jude seems to be fighting off a cold, which could be keeping his ANC down. Fortunately all the other critical counts look good and are recovering so ANC should be going up soon. Until there is an upward trend, we have to stay in the hospital.
This week we got some disappointing news about the bone marrow match that I wanted to let everyone know about. I've had a few days to mull it over and with the perspective of a few days to let it sink in, our bad luck almost seems comical to me at this point. It turns out that Jude has an extremely rare mutation in his bone marrow (HLA, for you medical types) typing and there are literally NO perfect matches in the ENTIRE database (according to the Be the Match website, there are 22.5 million potential donors and 600,000 cord blood units). Yes, 22.5 million people in there and Jude isn't a match with any of them because of a rare mutation. Crazy, huh?
Fortunately, this won't change Jude's long-term prognosis, but makes the transplant a little more tricky. It makes me grateful for new types of transplants that make this an inconvenience but not a life-ending disaster. It also gives us the opportunity empathize with all the other Hispanic, Black, Asian and other diverse communities out there for whom this is a normal occurrence. So if you aren't on the registry, get on it! Especially if you come from a non-Caucasian racial/ethnic background! http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/ (just to clarify, getting extra people on the registry won't help Jude, but it could help someone else)
So Jude's bone marrow transplant (BMT) doctor will now choose between 2 transplants: either a haploidentical transplant (with Aidan being the donor) - essentially a "half match" transplant - OR a transplant from an unrelated cord blood donor with whom Jude has a 4/6 match. (If you like medical reading, here is a good article on the pros and cons, thanks to my amazingly smart childhood friend turned doctor, Megan Massey, for sending me this article: http://www.nature.com/bmt/journal/v46/n3/full/bmt2010260a.html). As the article outlines, there are pros and cons to each type of transplant, which the doctor will weigh against Jude's particular case. We are also doing some research to see if Jude might be better off at a hospital that specializes in less-common types of transplants.
The bottom line: hope is not lost at all and this does not significantly change the big picture. Either way, even with a "normal" BMT, it is a procedure with lots of risks but for right now, it offers our best shot at giving Jude a long-term cure so that's what we will do. Challenge accepted. As the ever-amazing Morgan family often talked about with Dana, there is a divine reason for all these challenges and hurdles. We may not ever find out why, but we just have to keep the faith and hope alive.
Happy Friday all! Jude conked out after a busy morning of playing and running around the hospital halls so I'm taking a brief second for an update. The good news is that for the most part, the "old Jude" seems to be back. No more steroid side effects or strange agitation/pain from the triple drug interthecal (spinal fluid) chemo. He's been happy and silly and tearing up the hospital hallways on his scooter. Yay for that! Unfortunately, Jude's ANC hasn't gotten the message. Today's ANC took a dip down and is at 32. For right now, its nothing to be concerned about - sometimes ANC recovery just takes a while longer and Jude seems to be fighting off a cold, which could be keeping his ANC down. Fortunately all the other critical counts look good and are recovering so ANC should be going up soon. Until there is an upward trend, we have to stay in the hospital.
This week we got some disappointing news about the bone marrow match that I wanted to let everyone know about. I've had a few days to mull it over and with the perspective of a few days to let it sink in, our bad luck almost seems comical to me at this point. It turns out that Jude has an extremely rare mutation in his bone marrow (HLA, for you medical types) typing and there are literally NO perfect matches in the ENTIRE database (according to the Be the Match website, there are 22.5 million potential donors and 600,000 cord blood units). Yes, 22.5 million people in there and Jude isn't a match with any of them because of a rare mutation. Crazy, huh?
Fortunately, this won't change Jude's long-term prognosis, but makes the transplant a little more tricky. It makes me grateful for new types of transplants that make this an inconvenience but not a life-ending disaster. It also gives us the opportunity empathize with all the other Hispanic, Black, Asian and other diverse communities out there for whom this is a normal occurrence. So if you aren't on the registry, get on it! Especially if you come from a non-Caucasian racial/ethnic background! http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/ (just to clarify, getting extra people on the registry won't help Jude, but it could help someone else)
So Jude's bone marrow transplant (BMT) doctor will now choose between 2 transplants: either a haploidentical transplant (with Aidan being the donor) - essentially a "half match" transplant - OR a transplant from an unrelated cord blood donor with whom Jude has a 4/6 match. (If you like medical reading, here is a good article on the pros and cons, thanks to my amazingly smart childhood friend turned doctor, Megan Massey, for sending me this article: http://www.nature.com/bmt/journal/v46/n3/full/bmt2010260a.html). As the article outlines, there are pros and cons to each type of transplant, which the doctor will weigh against Jude's particular case. We are also doing some research to see if Jude might be better off at a hospital that specializes in less-common types of transplants.
The bottom line: hope is not lost at all and this does not significantly change the big picture. Either way, even with a "normal" BMT, it is a procedure with lots of risks but for right now, it offers our best shot at giving Jude a long-term cure so that's what we will do. Challenge accepted. As the ever-amazing Morgan family often talked about with Dana, there is a divine reason for all these challenges and hurdles. We may not ever find out why, but we just have to keep the faith and hope alive.
Unexpected turn in our journeyBy Barbara Anderson — Jan 9, 2015 2:52pm
Damn. Things were really starting to look up. Jude was back in school, counting to 10, playing without any of the pesky physical delays from his earlier treatments, just generally kicking butt at life and we were once again becoming more like a "normal" family rather than a cancer family. Looking back, I am so grateful at our amazing Halloween (complete with 3 costumes for all our parties and events), Thanksgiving (visiting with loved ones) and Christmas (Santa visits, Zoo lights, helicopter landings). I was making plans to get my spinning teacher certification and start teaching classes again. Aidan had a great new workout plan for the new year and we even did a household budget. And Finn, our sweet little guy, is sleeping through the night, eating like he has a hollow leg, on the cusp on crawling and totally enamored with anything Jude does. 2015 was going to be the year for an Anderson family comeback. That's what makes the news from our last spinal tap such a punch in the gut.
As those of you who follow this journal know, on Wednesday, Jude was scheduled for his monthly spinal tap where he gets chemo and where his oncologist takes a small sample of his cerebral spinal fluid to check if any leukemia is present in his CNS (central nervous system). At our visit, we enjoyed visiting with all the nurses, techs and doctors at the hospital (sounds funny, but they have been a part of our lives for the past year and a half and feel like an extension of our family by now). Everyone remarked at how great Jude looked and how much he had grown and developed. The spinal tap wrapped up around noon and we headed home for lunch. Thankfully, Aidan had taken the day off for the appointment.
We got the call around 1pm. The second I heard the voice of our oncologist, Dr. Zeng, on the line, I knew we were in for not good news. Our worst fears had come true. She explained that leukemia cells were present in his CNS, signaling a relapse in Jude's leukemia. Because Jude relapsed so soon into maintenance, it is considered an "early relapse" and in her words, "it is challenging to treat, but not a death sentence." Also confounding is the fact that Jude didn't have leukemia in his CNS at first diagnosis so it is challenging as to why they are there now.
So there you go. Unlike last time when Jude was diagnosed and we had to rush into the hospital, we do not have to return to the hospital until Monday. We start again with an appointment with Dr. Zeng and Dr. Katsanis (the director of the clinic and doctor who specializes in tough cases) to go over treatment. Jude then has an echocardiogram to assess his heart since some of the chemos he will receive again can damage his heart and they need to make sure he can withstand more of the treatment. Then on Wednesday, we go in for a bone marrow biopsy to determine if the leukemia is present in his bone marrow, as well as more interthecal chemo (chemo to his spinal fluid) to start the process to get the leukemia into remission again. The results from this test will dictate his treatment regimen. Dr. Zeng said that he will likely require a bone marrow transplant. Whatever the results of the bone marrow biopsy, treatment will be grueling and similar to induction (first phase) from last time with heavy steroids, horrible chemos and scary side effects including wiping out Jude's immune system making him more prone to life-threatening infections like the one that landed him in the ICU last time.
In the meantime, I am reminded of the words to a song that my Mom loved - "I Hope You Dance" by Lee Ann Womack. This weekend we are dancing. We are making the most of Jude's good health (at least on the surface, haha). As soon as we got the news, we decided to take Jude and Finn to Disneyland to maximize our good time. We've been here for not yet 24 hours and have already experienced Buzz, Woody, Sully, Mike, Mickey and all Jude's other friends that have lifted his spirits over the past year and a half. While its hard not to fall apart and have my heart break into a million pieces every time I look at Jude's face and know what's coming, my heart is lifted by seeing the joy and wonder on Jude's face at every little Disney thing.
For those of you reading this who want to spring into action and help, don't fear. After going through this once already, especially back then when Jude was an only child, I am not shy about asking for help and reaching out. I just don't know what yet but I will ask when the time is right. For this exact moment, please hold tight. After we hear more from the doctors, we are going to brainstorm and come up with our list. After seeing friends go through a leukemia relapse, I know how it can be tough to sit by and want to do anything possible to brighten their day.
The biggest thing everyone can do right now is send some prayers, healing energy, positive thoughts, good juju - whatever you believe in - Jude's way. We do have some positive things in our favor, including the fact that his leukemia went into quick remission last time and that he doesn't have any of the genes that are known to be more resistant to chemo. Let's pray and hope that whatever caused his leukemia to come back can be wiped out quickly and permanently this time.
Thanks for all of your love, support and prayers. It means a lot to be facing another tough journey with such amazing people in our corner. We are so grateful for each and every one of you out there who has followed our story and shown us kindness.
Damn. Things were really starting to look up. Jude was back in school, counting to 10, playing without any of the pesky physical delays from his earlier treatments, just generally kicking butt at life and we were once again becoming more like a "normal" family rather than a cancer family. Looking back, I am so grateful at our amazing Halloween (complete with 3 costumes for all our parties and events), Thanksgiving (visiting with loved ones) and Christmas (Santa visits, Zoo lights, helicopter landings). I was making plans to get my spinning teacher certification and start teaching classes again. Aidan had a great new workout plan for the new year and we even did a household budget. And Finn, our sweet little guy, is sleeping through the night, eating like he has a hollow leg, on the cusp on crawling and totally enamored with anything Jude does. 2015 was going to be the year for an Anderson family comeback. That's what makes the news from our last spinal tap such a punch in the gut.
As those of you who follow this journal know, on Wednesday, Jude was scheduled for his monthly spinal tap where he gets chemo and where his oncologist takes a small sample of his cerebral spinal fluid to check if any leukemia is present in his CNS (central nervous system). At our visit, we enjoyed visiting with all the nurses, techs and doctors at the hospital (sounds funny, but they have been a part of our lives for the past year and a half and feel like an extension of our family by now). Everyone remarked at how great Jude looked and how much he had grown and developed. The spinal tap wrapped up around noon and we headed home for lunch. Thankfully, Aidan had taken the day off for the appointment.
We got the call around 1pm. The second I heard the voice of our oncologist, Dr. Zeng, on the line, I knew we were in for not good news. Our worst fears had come true. She explained that leukemia cells were present in his CNS, signaling a relapse in Jude's leukemia. Because Jude relapsed so soon into maintenance, it is considered an "early relapse" and in her words, "it is challenging to treat, but not a death sentence." Also confounding is the fact that Jude didn't have leukemia in his CNS at first diagnosis so it is challenging as to why they are there now.
So there you go. Unlike last time when Jude was diagnosed and we had to rush into the hospital, we do not have to return to the hospital until Monday. We start again with an appointment with Dr. Zeng and Dr. Katsanis (the director of the clinic and doctor who specializes in tough cases) to go over treatment. Jude then has an echocardiogram to assess his heart since some of the chemos he will receive again can damage his heart and they need to make sure he can withstand more of the treatment. Then on Wednesday, we go in for a bone marrow biopsy to determine if the leukemia is present in his bone marrow, as well as more interthecal chemo (chemo to his spinal fluid) to start the process to get the leukemia into remission again. The results from this test will dictate his treatment regimen. Dr. Zeng said that he will likely require a bone marrow transplant. Whatever the results of the bone marrow biopsy, treatment will be grueling and similar to induction (first phase) from last time with heavy steroids, horrible chemos and scary side effects including wiping out Jude's immune system making him more prone to life-threatening infections like the one that landed him in the ICU last time.
In the meantime, I am reminded of the words to a song that my Mom loved - "I Hope You Dance" by Lee Ann Womack. This weekend we are dancing. We are making the most of Jude's good health (at least on the surface, haha). As soon as we got the news, we decided to take Jude and Finn to Disneyland to maximize our good time. We've been here for not yet 24 hours and have already experienced Buzz, Woody, Sully, Mike, Mickey and all Jude's other friends that have lifted his spirits over the past year and a half. While its hard not to fall apart and have my heart break into a million pieces every time I look at Jude's face and know what's coming, my heart is lifted by seeing the joy and wonder on Jude's face at every little Disney thing.
For those of you reading this who want to spring into action and help, don't fear. After going through this once already, especially back then when Jude was an only child, I am not shy about asking for help and reaching out. I just don't know what yet but I will ask when the time is right. For this exact moment, please hold tight. After we hear more from the doctors, we are going to brainstorm and come up with our list. After seeing friends go through a leukemia relapse, I know how it can be tough to sit by and want to do anything possible to brighten their day.
The biggest thing everyone can do right now is send some prayers, healing energy, positive thoughts, good juju - whatever you believe in - Jude's way. We do have some positive things in our favor, including the fact that his leukemia went into quick remission last time and that he doesn't have any of the genes that are known to be more resistant to chemo. Let's pray and hope that whatever caused his leukemia to come back can be wiped out quickly and permanently this time.
Thanks for all of your love, support and prayers. It means a lot to be facing another tough journey with such amazing people in our corner. We are so grateful for each and every one of you out there who has followed our story and shown us kindness.