Tremendous thanks to everyone for all of the amazing support we’ve received, both financial and emotional! Kai couldn’t have done it without you!!! We are finally out of the hospital and staying at the Portland Ronald McDonald house! Kai is doing amazing considering everything he’s been through. He loves going outside again and we’ve been taking full advantage of our newfound freedom! His counts are looking great and he’s pretty much back to his normal self again. He had some blood in his stool which was determined to be from graft vs. host disease which is common during transplant recovery but he’s been taking a steroid that seems to be working to fight it off. We still go to clinics twice a week, one of which is a 4-5 hr. appointment for an IVIG infusion to keep the CMV at bay until his immune system is a little stronger. It’s not uncommon for transplant kids to need blood and platelet transfusion at this stage of the game but baby boy has been making his own and hasn’t needed them! There is even talk of going from weekly IVIG to monthly! He’s still taking a dozen or so meds anywhere from 2 to 4 times a day as well as two IV meds, one of them being a 16 hour IV nutrition infusion overnight. We have been weaning some of the pain/sedation meds that he’s been on since the ICU so that’s been tough but we’re getting closer and closer to a normal life again and the meds are dropping off one by one. If everything continues to go well we should get to come home on Christmas eve which will be 100 days post-transplant. We couldn’t ask for a better Christmas present!!! It looks as though we’re in the final stretch of our stay here in Portland but finances are stretched pretty thin at this point so any extra help would be greatly appreciated. If all goes we will be back to work again right after Christmas so we pretty much just need to take care of December’s bills & hopefully a little something for Christmas. Thank you all for your continued love and support, we can’t thank you enough and we love you all!! Go team Kai!!!!
*** BABY KAI UPDATE ***
We can’t thank you all enough for making it possible to stay close to Kai throughout this tough journey. It’s been quite a while since our last update and many positive changes have taken place over the last couple weeks. Just after our last update we were moved out of the ICU back upstairs to 10 South. The following week Kai’s counts were good enough that they took us off isolation. We still have to stay within the 10 south unit but now we can wander the halls and talk with other families here, not to mention the nurses and docs no longer have to gown up in their minion suits when they come in our room Kai loves getting to walk the halls and explore the playroom and see other kids!
The best, and long awaited news is the doctors said as long as things keep moving forward the way they have been we could be discharged sometime next week!!! We will still be away from home for about two months but we will be free to take our baby outside! Our family will be playing in the woods together before we know it!!! Pleasure overload!!! Lol! Sooo thankful for the powerful strength my baby has to help heal himself, he will never know how much love this world has for him!! So many new and old friends to play with!!!! Thank you all for your love and support, we couldn't have done it without you!!!! FOREVER THANKFUL!!! GO TEAM KAI!!!!! XOXOX
GET EXCITED!!! KAI HAS 100% DONOR CELLS AT 3 WEEKS POST-TRANSPLANT!!! We are so thankful and this definitely makes it all worth it! Count your blessings folks, and they will continue to grow! Being in the ICU for the last 20 days has been difficult but will be coming to an end shortly, just as soon as we can figure out how to minimize withdrawal symptoms, and then we will be back upstairs for a couple more weeks! After being in the hospital for more than 11 weeks, a couple more weeks feel like nothing! Having two surgeries and being on a ventilator, he spent 15 days heavily sedated and on a variety of pain medications, so withdrawals are just part of the process unfortunately.
We also had a little scare on the 8th the day before he was extubated. They had done an ultrasound on him and said that his gallbladder was inflamed and he had Cholecystitis and even though they had never seen it in an infant they might need to remove his gallbladder, talk about scary!!! No more surgeries please!!! Thankfully Jason went online and did research. He found that people who are on TPN (IV nutrition) for weeks often will have an inflamed gallbladder and that it gets better as soon as you introduce food back to the stomach. Dad brought this up to the nurse and she said she would mention it. Thankfully when the surgery team came to see us they told us the same thing that Jason had just looked up and that they did not want to rush into surgery but would keep an eye on it. THANK GOD!! So far so good!! :D
He was extubated the next evening at around 10pm and everyone was really impressed with how well he did being taken off the ventilator! Other than the withdrawals he's doing amazing!! He is very impressive and the staff agrees! As of yesterday he was still vomiting very regularly but his shakes have started to go away. It’s still obvious that he’s in pain because he has little crying fits and normally he’s a very content baby and rarely ever cries! He is so amazing, even through all of this he still cries less than the average baby!!! This kid is a fierce fighter and I am sooo proud to be his momma!! We are hoping today will be better especially because he went all night without throwing up!! Yay Kai!!! Yesterday he smiled and laughed throughout the day when he wasn’t vomiting and it was simply amazing!! The staff loved it too, it’s not often they get to see the kids while they are getting better!
Please keep up the good vibes and continue to share our page as we move forward on our journey! We are expecting to have another few weeks or so at the hospital followed by 6 weeks at Ronald McDonald house here in Portland before we can go back home. Thank you all for your ongoing support and positive energy! We couldn't do it without you and we love you all!!! GO TEAM KAI!!!!
Well, it’s been a rough week for Kai. He’s had to get a ton of fluids from all the meds, blood and platelet infusions, nutrition via IV and the fluids they give to help wash everything through so it doesn’t remain in the kidneys and liver. His little organs just couldn’t keep up so they moved us down to the ICU last Thursday for dialysis to get the excess fluids out. That meant another surgery to implant a large catheter into a main vein in his neck to withdraw blood into the dialysis machine that removes fluid and infuses the blood back into him. Kai is so little that they had to do a slow continuous dialysis over several days to avoid shocking his system too much. Unfortunately that meant keeping him heavily sedated, on a breathing machine, and in bed for the last week.
Although we really miss getting to hold him and play with him, we’re glad to see the fluids coming off slowly but surely. Before we came down to the ICU his belly and liver had gotten really swollen to the point that it was uncomfortable for him to be held.
On the good side of things he’s just about done with the continuous dialysis and his immune system is starting to come back now. After 3 days in a row of an ANC (Absolute Neutrophil Count) of 500 or more he’s officially considered to be grafted. That means that his new bone marrow has taken root and his new immune cells are growing. Yesterday was his 3rd day in a row of ANC counts over 500 and he’s up to 1720 so it’s official. After getting fluids off his kidneys and liver are starting to recover from the fluid overload so everything seems to be coming together at once.
The docs just finished up CVVH (Continuous Dialysis) early this morning and plan on removing the breathing tube later today. They say he may still need a couple sessions of hemodialysis (periodic sessions that last 4 hours at a time) over the next few days but as long as everything goes well we should be able to move back up to our normal room and do it there. Unfortunately that means he’ll still need the catheter in his neck until he’s totally finished so he’ll have to wear some sleeve like contraptions that keep him from bending at his elbows so he can’t reach it and yank it out. At this point his need for extra fluids, meds, and blood products is slowly being reduced as the grafting process continues. We’re hoping that his organs can keep up with the new reduced fluid requirements. Everyday he’s getting closer and closer to being done with this whole process and we’re very excited about that. It will be great to be back upstairs where things are much quieter and we can hold and play with Kai. He really misses being held and we miss holding him. It feels strange to have not picked him up for an entire week.
Another part of this whole adventure I haven’t talked about in a while is managing the CMV level through transplant. If you've followed Kai’s story you’ll remember that we were able to get his level down to “undetectable” before transplant but one of the drugs we were using makes it harder for the marrow to graft so we attempted to discontinue its use during transplant. Unfortunately that allowed the CMV level to start creeping back up steadily over the last several weeks. In response they decided to start using that drug again. At first it didn't appear to be helping, the CMV level kept increasing reaching a level of 3900 late last week. There was talk of trying another med if we couldn't get it headed back down soon but we just got the news this morning that the level came back down to 3000. So as long as it keeps going down we won’t need anything new. And as far as we can tell thus far the pre-existing drug hasn't seemed to interfere with the grafting process because his counts are looking great.
Please keep up the good vibes and continue to share our page as we move forward on our journey! We are expecting to have another 4 weeks or so at the hospital followed by 6 weeks at Ronald McDonald house here in Portland before we can go back home. Thank you all for your ongoing support and positive energy! We couldn't do it without you!!!
Sorry I haven’t had a chance to update in a while; Kai is at the point where he requires much more attention to keep him feeling well.
Our gorgeous baby boy was 4 months old on the 14th, 16 1/2 pounds and hitting milestones early even though we have been in the hospital since he was 10 weeks old! He consistently impresses the Docs and Nurses and gets sooo much love from everyone!!
He received his bone marrow transplant on the 15th and everything went very well! The transplant process is just an infusion of blood from the donor that was taken from within his bones so it contains the stem cells that develop into all the different cells contained in healthy blood. At this point all we are allowed to know about Kai’s bone marrow donor is their age, sex, and whether they live in the US or not. He is a 42 year old CMV positive male from the US. Since Kai is CMV positive they also preferred a CMV positive donor so when the new immune system develops it will have already learned to defend against CMV.
Now we watch and wait for the new marrow to make its way into his bones, take root, and start growing his new immune system. The docs tell us that it usually takes 2-4 weeks for the new marrow to find its way into the bones, engraft there & start seeing his white blood cell counts start to rise again. Once the process is finished all of Kai’s blood will have been replaced by the donors blood. Kai was O+ whereas the donor is B+ so this will actually change Kai’s blood type to B+.
We are now 6 days post-transplant and so far this period after transplant has been the toughest on Kai. His WBC counts are still non-existent as expected. He’s been dealing with mucositis which is a chemo side effect. Along with the immune system cells, chemo also wipes out cells that line the mouth and entire digestive tract. It can cause mouth sores and trouble digesting. For the last 3 days Kai has had trouble swallowing so he’s now getting his nutrients via IV. It also makes him salivate a lot which makes him nauseous and now his throat is soar and raspy too.
He still has a rash left on his cheeks from the ATG last week but it’s gone away on the rest of his body. They have him on a morphine drip to help manage his pain, along with a ton of other drugs to manage other side effects and avoid infection and other potential problems while his counts are low. We make sure to cuddle him pretty much 24/7 and play lots of music to keep his spirits up.
The docs assure us that even with the problems that have come up he’s still doing exceptionally well. Needless to say, we’re anxious to get past this next few weeks and see his counts rise so he can start feeling better and we can finally get out of our little isolation room. He misses the trees and beauty of the outdoors. We’ve got so many fun things we want to experience with him! Please keep sending positive thoughts & prayers that he’ll make a speedy recovery! All of your love & ongoing support has been so helpful; we couldn’t do it without you!! Thank you all so much!!!
Thank you all for your ongoing support!!! We’re quickly approaching 35% of our goal! Kai is now finished with his chemotherapy and I’m pleased to announce that he’s done extremely well. He started on Thurs. 9/4 (Day -11) with a chemo drug known as Busulfan. They start with a single test dose and do a bunch of blood work the following morning to see how his body is metabolizing it so they can adjust the future dosage if necessary. The results came back by the afternoon allowing time for 2 doses that day. Then for the following 3 days he received 4 doses per day with 1 last dose on 9/9 (Day -6). That same day they gave him his first dose of the next chemo drug called Fludarabine. He sailed through those days with no signs that anything different was happening.
For the following 4 days he received 1 dose of Fludarabine and a 6 ½ hour infusion of ATG each day. ATG isn’t a chemo drug, it’s actually a protein that is extracted from rabbit blood but it works similarly to chemo as it is used to help wipe out the remaining cells of Kai’s immune system. The doctors warned us that ATG was the toughest one to get through and that most kids have significant reactions to it, often leading to visits to the intensive care unit. Although I can’t say that went as well as the first 6 days, he still did very well and impressed the doctors.
He made it through the first 5 hours of the first infusion with no trouble but then got a fever and a pretty bad rash from head to toe. I would compare it to a really bad sunburn, it made his skin very sensitive. To help minimize pain they gave him several different drugs including Tylenol, morphine, oxycodone and Benadryl. That helped a lot but he was still incredibly itchy and the intense itch made him move a lot trying to rub himself against whatever he could and that seemed to just irritate the rash further. They gave a steroid each day as a pre-med for his ATG infusion and that would help clear it up for a while during the day but it came back that evening and made for another tough night. The following day his body seemed to figure out how to tolerate it better because he had no more fevers and the rash was much less intense. The docs also suggested trying IV hydrocortisone at bed time since it was the worst in the evenings. By the last day he had no problems other than some light residual rash that hasn't quite gone completely away but it hasn't been causing him any discomfort as far as we can tell.
So out of his entire 10 days of chemo he really only had 2 real rough days, which although they seemed pretty bad to me where really mellow compared to what the docs where expecting. We’re still not out of the woods yet, as they say that it generally takes 2-4 weeks for the effects of the chemo to really kick in and complete their task so he will likely still have some tough days ahead but given how well he’s done thus far we have high hopes. We’re counting our blessings & are grateful for every day that he feels good!
**UPDATE ON BABY KAI**
Thank you all for your love, prayers and continued support!!! We wouldn't be able to help Baby Kai on his journey back to health without youl!! This week has been a very busy one for us! We received the news that Kai's transplant donors' test came back great! They have also been doing a bunch of pre-transplant tests on Kai to make sure he is in optimum health before beginning what they call the full intensity conditioning regimen to prepare him for transplant. They did a CT Scan, X-ray, an EKG and a bunch of blood work to name a few. The Docs have given us the go ahead and tell us that all tests came back perfect and that his CMV is no longer detectable. They think he is strong enough to handle the full intensity chemotherapy regimen and tonight he will start with an anti-seizure medicine to prepare him for his fist chemo medicine to begin tomorrow. Kai will receive chemo meds for the following 10 days until the day before transplant. His transplant day, also known as day zero will be September 15th. From there, we wait and watch as his new immune system grows for the next 100+ days. Please continue to pray, send love and share his GoFundMe page!!! WE LOVE YOU ALL AND CAN'T THANK YOU ENOUGH!!!!!
Thank you all so much! We're amazed by the astounding community support we have received! We're quickly approaching 25% of our goal and we've now been living at the hospital for a month.
Unfortunately our transplant date has been pushed back from what we were originally told they were aiming for. The new plan starts "conditioning" on Sept. 4th. That will consist of 11 days of chemotherapy followed immediately by transplant on the 16th. Our donor match is currently undergoing the last round of testing to insure that they are in optimal health. All of the test results will be back by the beginning of next week.
We found out that the backup donor we had originally been looking at is a 9 of 10 match which is still acceptable but not as optimal as the main donor so they are testing yet another donor for the backup position to see if they are a better match, we would love to see another 10 of 10 match as a backup.
The best news we've received since last update is regarding Kai's CMV levels. CMV is very common and doesn't pose a problem for people with healthy immune systems but it can be devastating for those with a compromised immune system. That has really been our main concern that it could lead to complications during the transplant process. Kai has not been symptomatic thus far so for the time being it has just been a number on paper and we hope it stays that way.
Originally his tests showed a "viral load" of 26,000. The doctors had an unofficial goal of getting that number down to 10,000 or less before transplant. After his first week of treatment his levels held steady at 26,000 and although we were disappointed, the docs assured us that they where happy it didn't go up. The following week of treatment brought amazing results and dropped the level down to 980, well below the goal of 10,000. Now, we've just gotten test results back from the 3rd week of treatment and the level is undetectable, it's so low they can no longer assign a number to it!
We're very excited because this really puts Kai in optimal position for transplant. Hopefully our new schedule will stay as is this time. So far their timelines change often here but we're anxious to get started so we can move forward and put this experience behind us. We'll still have about a 3 1/2 month stay in Portland after the transplant so the sooner we get started the sooner we can get home :)
On the good side Doernbecher Children's Hospital does an excellent job of trying to keep things fun for the kids while they're here. Yesterday there was a visit from the Chelsea Foundation, they come once a month and give the kids new costumes and do a parade around the unit. Since Kai is in isolation he couldn't be in the parade but he got a really cute spider costume & watched the parade through the window.
Thank you all for your ongoing love & support. Kai is clearly thriving off all of the positive energy that's been sent. He's been growing rapidly and doing very well! We will post more updates as we get more info.
I want to start by thanking everyone for your continued support! We have almost hit 20% of our overall goal which is allowing us to be here 24/7 with Kai through his tough journey! It means the world to us as we consider it our duty to Kai to make every moment something special and fun so he has every reason to hold on and fight for his right to live a long and full life.
Kai is 3 months old today and we have some great news to celebrate, we have found an identical match for Kai's bone marrow donor!!! They have 10 DNA points that they compare when looking for a bone marrow match and his donor matches all 10. That gives him the best chance at success!
Unfortunately, despite treatment Kai's viral load from CMV has remained the same. In a sense this is good because it hasn't risen, but we would really like to see it fall significantly before transplant to minimize the possibility of complications. On the good side he's not experienced any symptoms so we are very hopeful that it will continue to just be a number on paper rather than causing any actual problems.
The immune system includes T cells, B cells, and NK cells. Kai has no functional T cells or B cells but his NK cells are still functional so they pose a risk unless they are killed off first with chemotherapy. Now that we have a donor lined up they are aiming to begin the "conditioning" phase by the last week of august. If all goes well that will consist of 11 days of chemotherapy to make sure Kai's immune system is killed off completely so that it won't attack the donated marrow cells. If he has too much of his immune system intact it will reject the donor marrow causing what is known as "Graft vs. Host Disease".
The conditioning phase will be followed immediately by his bone marrow transplant. The transplant itself is basically just a blood infusion. The marrow cells will migrate to the bone and take root there. At this point he will be the most vulnerable to infections and other complications while we are waiting for the new cells to take root within his bones and begin growing his new immune system. For about 100 days following transplant Kai will be watched very carefully to assure that any problems or complications are caught and treated immediately.
We are very excited to be getting the process started as obviously we are anxious to finish the process and return home with our healthy baby boy. At the same time we are nervous because we know this is where things get tough for Kai. Obviously no one wants to see their little one have to deal with chemotherapy. We're really hoping it won't be as bad as our imaginations can sometimes make it out to be. Luckily we have met several other families with children who have successfully beat SCID, often with some complications and yet today they are at home and doing well. That helps us to keep focused on a happy, healthy future for Kai.
Please keep Kai in your thoughts and prayers as we move through this difficult journey. We are forever grateful for all of the ongoing love and support you all continue to share!!!
If you would like to send anything to Kai (No flowers or Latex Balloons are allowed in his unit) we can receive mail at the following address:
Kaimani Knight, Floor 10 south, Room 7
Doernbecher Children's Hospital
3550 SW US Veterans Hospital Rd.
Portland, OR 97239
We can't thank you enough for all of your amazing support!!! It has allowed us to remain close to Kai and put all of our energy into helping him thrive through this challenging time. Kai is doing amazing given the circumstances. By all outward appearances you'd never guess he's anything less than perfectly healthy. With the help of singing and music, plus plenty of laughter, he's still very happy and smiling a lot even though he's had to deal with a lot of needles and uncomfortable situations. The hospital staff has been amazing and pleasantly surprised with how much fun we have together. Kai is helping teach all of us the value of living in the present moment :)
Unfortunately Kai did test positive for CMV (Cytomegalovirus) which is extremely common but can potentially be a real problem for people with a compromised immune system. Luckily they caught it very early due to the chest x-rays they took at Riverbend. Kai is not symptomatic but the virus is circulating in his body. He is currently being treated with potent drugs to get the "viral load" down as low as possible before transplant. Although some of the medication he's being treated with can have some scary side effects, he seems to be dealing with them very well and hasn't had any problems so far.
After several days of not letting Kai eat for hours anticipating a procedure the following morning, then being told it had to be postponed till the next day, Kai finally got his "Central Line", also known as a "Hickman", installed. It is a semi-permanent IV that is surgically stitched into his chest right above his heart. It allows for easy blood draws and medications without having to be stuck with a needle over & over again. The line will stay in place until the entire transplant & recovery process is finished several months from now. It was especially important for Kai because they need a lot of blood for testing and they didn't have much success with traditional blood draws. I was concerned at first that having a line into his chest would be very uncomfortable and make it hard to hold him but he's taking it like a champ and doesn't seem to mind or even notice.
Since checking into the hospital Kai has started gaining an interest in toys. He's now received several stuffed animals and a really fun musical mobile that he loves as gifts from people here at the hospital. Clearly, all of the love, prayers, kind thoughts & support you have all been sending is producing outstanding results! We really couldn't hope for things to go better than they have been and we are eternally grateful!!!
Our newborn son Kaimani has been diagnosed with SCID (Severe Combined Immunodeficiency) which basically means he has no functional immune system. He is currently being protected by antibodies inherited from mom at birth but those are wearing off a little each day. If not treated the condition is fatal, usually within the first year. With treatment he is expected to make a full recovery.
Kai wll need chemotherapy followed by a bone marrow transplant. For the best results they would prefer to start the process by or before 3 months of age. He is facing months of aggressive treatments at Doernbecher Children's Hospital in Portland. Insurance will pay for his procedure but we will be leaving our home for a minimum of 3 months to support him on his journey back to health and will not be able to work during this time.
Please help our family by sharing this link while keeping us in your thoughts and sending positive energy and love our way for Kai to thrive off of!
Second if you can afford to help by easing some of the financial burden we are going to endure through this challenging time it would be very helpful.
Any amount will be greatly appreciated!
We are in the process of locating a suitable bone marrow doner that is a proper match with Kai. If you would like to volunteer to be a doner you can register at www.BeTheMatch.org to be added to their donor registry.
Thank you all for everything you have done so far and for all of the positive energy and love you are sending! We love you all more than you know!