Oh Happy Day!

I haven't even started typing and I already have tears streaming down my face. Oliver has not had chemo for 2 months and his counts are stable. HIS COUNTS ARE STABLE! I know I haven't posted for a while, so let me back up a bit...When Oliver was diagnosed with HLH we knew the chance of him needing a bone marrow transplant to live was over 99%. When the chemo beat his immune system down to nothing Oliver's medical team scheduled a transplant meeting to answer our questions and tell us what to expect during and after transplant. At this point there was no scientific proof that he needed a whole new immune system. In retrospect I think it was foolish but Sean and I decided we would not transplant unless we knew for SURE, without a doubt that Oliver needed it to survive. Some of Oliver's doctors couldn't believe we would take such a risk and others supported us-and here we are! Oliver has a lab draw on Tuesday and if his counts are still good they are removing his PICC line. This means we will be free to go home! (I'm totally crying again!) He's been weaning off his meds and should be off everything by the end of October. We have some serious work to do before he can get rid of the feeding tube, but I'm up to the challenge. :)  Oliver will still need to be monitored closely with blood work and special attention if he gets a fever-but they said the word home...HOME!

So our newest problem is no longer medical-and I'm unbelievably happy to have this kind of problem-we gave up our house and our jobs to be here with Oliver over the last 8 months. We don't have a 'home' to go back to. I lowered our goal fundraising amount to reflect what I think we need to get on our feet. If you have anything extra to give we could really use it...OLIVER DID IT!

Oh what a day!

 For those of you curious about the rash it is most likely from the lovenox injections. It appears to be getting better and I have a list I symptoms that require a phone call/visit. But the rash update is not my biggest news. Oliver's labs are continuing to look stable and everything is trending in the right direction. He only has one more chemo infusion scheduled and he may not even get it! Tears roll down my face writing that! He did it!!! Many of you don't know the odds of Oliver not needing a bone marrow transplant in his situation. 1 in 1.2 million people are diagnosed with HLH, of those only 2% (that's 2% of 1 in 1.2 million) under 6 months old at diagnosis are infectious. We don't know for SURE that he's done and cured, but it's certainly looking that way! I am THRiLLeD that we didn't transplant when it was recommended! Sean's birthday is next weekend and we got permission to take Oliver camping for one night (as long as we're within an hour of the hospital *crying again*) I have to admit I'm a little nervous about going out into the world and making our own way...Sean and I gave up everything to be here with Oliver the last 6 months. We don't have a house or jobs to go back to-and the bigger problem is we still don't have a car! A couple people donated towards our car already and we have managed to keep that money aside but we need to add to it! Please, if you have anything extra to give, we could really use help getting our lives back together. I hate to ask after all the generosity we've been shown-I just don't know how we would have done any of this without you!! Thank you!!!!!

The SAP test results are in!

The SAP gene sequencing came back normal! This means we can not find a genetic reason for Oliver's HLH to be genetic and therefore can not say he needs a transplant!!! The next test will be weaning him off the chemo. If his HLH is genetic all of his HLH labs will show counts elevating tremendously-if it's not genetic he will finish weaning off chemo and be completely done and CURED! 

Re admitted :(

It was a good five days while it lasted, but we are back in the hospital again. Little Oliver started getting fussy with his meds a couple days ago and then throwing them up. He'd been acting like his tummy hurt, we thought maybe he was just a little gassy, but it turns out that he had some bowel gases leak through his bowel wall into his abdomen. It's very common for this to happen especially in NICU babies who's digestive systems aren't mature enough to handle eating food. We suspected that the fortification we've been adding to my breastmilk may have irritated his bowels causing a weak spot where gas could leak out. The treatment for this is a week on antibiotics and bowel rest, which means Oliver won't be eating actual food for a week but rather receiving his nutrition through his PICC line. When we brought him in he had a low fever and you could tell he wasn't feeling well. He slept most of the day yesterday, but woke up happy this morning I'll smiles and even laughing at being tickled! He is a trooper, that's for sure!! We will likely be in the hospital a week or two and if nothing else happens be discharged again. He will not be getting his chemo this week because of their irritated spot in his bowels, so I'm sure his doctors will be watching his HLH labs closely. 

Flash back

I feel as though I'm having flashbacks to the beginning days when we were waiting for test results. It seems there is one more genetic test that hasn't been done, and will weight things very heavily in either the transplant or non transplant department. We are hoping to have that test back this week or the beginning of next. In the meantime Oliver still is thriving, he's doing so well and always keeps us smiling! Keep us in your thoughts and prayers-more to come. :)

A bump in the road

There are just a few genes that have been linked to HLH and so far all of the ones we've tested have come back normal...until yesterday. We did a preliminary test for SAP and the results prompted a more specific gene sequencing test. The preliminary test is NOT saying he has the mutated gene, but it does suggest it-so last night we drew blood to send to the lab. If the SAP comes back positive we are almost certainly looking at transplant. If it comes back negative we are in the same 'wait-and-watch' boat we are currently in. Oliver's positive trends in his HLH levels and blood counts gives me hope that he can still get through this without going to transplant...as I write this Oliver is sleeping next to me. He is the calmest, most relaxed baby. He sleeps peacefully through the night and when he wakes he is all smiles! His little noises are soft and subtle and his eyes are inquisitive. He rarely complains even though he has plenty to complain about. Yes, we hit the baby jackpot! 

Another record...BROKEN!

Oliver broke yesterday's record with 126,000 platelets today! He is stable and doing so good that the doctors have decided to start weaning his chemo. This means he doesn't have any chemotherapy or steroids for two weeks. We are very excited to get such a break from all the medication, and at the same time nervous because this is the true test of whether or not he will need a bone marrow transplant. If his disease is genetic it will flare up with the lack of chemo treatment, if it was infectious, it should be cured and all of his numbers should stay in the normal range. As of right now the only reason he still has to be in the hospital is because he is on the high flow to help him breathe. We can't go home with high flow, and the only thing stopping him from breathing is his liver taking up all the room in his belly! He's doing well and we are so pleased!!! Thank you everyone for keeping us, and especially little Oliver in your thoughts and prayers! 

Breaking records over here!

Oliver is at the end of another steroid pulse, which means he is irritable and not sleeping well. In turn, Sean and I are irritable and not sleeping well. Sean stayed up with Oliver most of the night and at 4:00 am, when Oliver was FINALLY asleep in his crib we just knew the nurses or CNA's would need to come in for something and wake our over tired baby...so we posted this sign on the door: 

Dex is short for dexethazone (the steroid Oliver is on). It worked beautifully and Oliver is STILL sleeping as I write this! Thank you nurse ninjas for helping our baby rest!!

On to the best news-Oliver has set yet another record with his platelets...drumroll please...102,000!!! We are so thrilled!!! The other levels I've been talking about have all stayed the same or improved, but nothing has gotten worse! He is doing so well :) :) :)

I had the opportunity to give blood yesterday for the first time since Oliver was born, it was so rewarding to give the gift Oliver has received so many times to someone else-you can only donate blood every 8 weeks, but platelets can be donated more frequently and it just so happens I have the ideal blood type for a platelet donor! Thank you to everyone who has donated-it's such an amazing and priceless gift of life...So many of the kids here are transfusion dependent (including Oliver) and their lives are literally saved because of blood products. 

Well, that's that! Oliver is all tucked in, making platelets in his sleep :) I think I will read the paper! Happy Saturday :)

A new treatment plan!

*note* I thought I posted this on Thursday (2 days ago)-just realized it was never posted...apologies for the back to back updated :/

We met with some of Oliver's medical team today and have developed a new plan for Oliver's treatment. He is currently getting the etoposide (IV chemo) once a week and the dex (oral chemo) every two weeks. He is responding well (meaning blood & platelet counts are staying up longer and ferritin, IL-2 and NK cell function are retuning to normal) someday soon we will try doing the etoposide every two weeks with the dex...if his levels don't start getting out whack that would indicate that his HLH is infectious. If his HLH is genetic the lack of chemo would allow the surpressed HLH to gain strength and flare up...infectious HLH means no transplant-so that's what we're hoping for!!!

4 months old today!

I can hardly believe everything that has happened in the last 4 months, but here we are! Oliver has continued to baffle doctors and his case was taken to a conference today with 10 other hospitals. Sean and I will meet with out team here at Seattle children's tomorrow to discuss future plans, treatment and transplant. Meanwhile Oliver is smiling and snuggling and rarely complains...he's such a tolerant little guy! 

Liver biopsy results!

Oliver's liver biopsy showed no signs of disease! And there was no evidence of HLH in his liver (he still has HLH, it's just not effecting his liver) :) They did see some scaring that was caused by trauma (IE infection)...the liver specialist believes strongly that the liver was being attacked by the HLH early on, but that we have suppressed the HLH enough that it is no longer hurting his liver. His Doctors believe his liver will eventually heal it's self and he probably won't have any permanent damage...good news indeed!

Red blood rocks!

Oliver is having another red blood transfusion today-just a reminder of how many times donors have saved our sweet Oliver's life. I could never be thankful enough to everyone who's donated blood products...not just for our little fighter but for all the transfusion dependent people out there! Thank you!

We have realized that we may be forced to make a difficult decision about Oliver's treatment sometime in the near future. If Oliver responds well to his chemo we will have to decide whether we believe he's cured or if we believe he's in remission...to transplant or not to transplant? Oliver's case is going to be presented at a conference with 10 major hospitals next Wednesday and on Thursday we are meeting with his medical team to discuss our future plans for him...not much we an do except wait for more information...each test and each new Doctor's brilliant mind adds a new peice to the puzzle. For now we just hold him and love him and take in the sweetness that is all his own. 

Something to keep our hopes up...

Oliver is finally well enough to tolerate full doses of chemo. He started with just 1/4 doses and worked his way up as his liver could tolerate it. The last two chemo infusions have been at full dose and when we checked his HLH labs he was responding beautifully! I'm going to back up and review a couple things-there are two types of HLH, one is infectious-the other is genetic. Infectious HLH is cured with chemo treatment, genetic HLH is cured with a bone marrow transplant. Both are fatal 100% of the time if not treated promptly. Fortunately for us they are both treated with the same drug and Oliver's doctors started treating him before they were even sure of his diagnosis...when he was just weeks old! Anyway, when a baby is born with HLH it is almost always genetic, so we have been running genetic tests since the day he was born trying desperately to find a gene that would explain his disease. To this day we have been unable to identify one. When the latest HLH tests came back we discovered that Oliver's IL-2 receptors have almost returned to normal, and his ferritin levels (which have always been too high to chart-over 10,000) are under 5,000! Still a long way from normal, which is less than 200, but a HUGE improvement. But the most promising test result is that his NK cells (an important part of his immune system) went from non-existant to having some that didn't do their job and now??? He has them AND they are working properly! The reason this is such great news is that it is unlikely that we would see such remarkable changes if genetics were the reason for Oliver's HLH...so here we sit hoping and praying that Oliver responds so well to the chemo that we can avoid transplant!!! Yet another reason to keep smiling!

Platelets, platelets and more platelets!

Oliver is responding very well to the chemo! The treatment has suppressed the HLH enough that it is not destroying his cells nearly as fast as it once was. We are happy to report that Oliver's platelet level reached a new record today-81,000! With all of the positive changes we're seeing in Oliver's weekly HLH tests his doctors have decided he may not need all 21 weeks of etoposide (chemo) treatments. We are still getting chemo weekly for now, but this week we will hold the steroids. Sean and I are thrilled that we are able to hold the steroids because they make Oliver feel irritable and hungry-which makes him unhappy...so we get to skip that (for this week at least!)

Also, we are inching closer to transplant. I thought we were months away from transplant, but Oliver will get a liver biopsy sometime in the next week to determine if his liver can handle the pre-transplant chemo (which is different than the chemo he currently takes). If his body is ready the only other criteria he has to meet is age...he has to be at least 4 months old (May 28th). This means he could be getting his transplant in the next few weeks! We are excited and nervous at the same time!

Oliver continued his high flow wean yesterday and was close to being off respiratory support completely, but his belly got a little bigger yesterday, which took precious space away from his lungs-after a few hours he started showing sighs of fatigue...we increased the high flow again and PRESTO! Happy, relaxed baby ;)

When reading to Oliver this morning I noticed he has really started studying the pictures on the pages...he is so interested in the details now instead of just the contrast. He was looking at the pages intently for more than a minute...also, when he is upset and hard to sooth there are a few songs we sing to him that work like magic. I think we've got a creative boy on our hands ;) ;) ;)

Gaining Ground

A lot has happened in the last week! Oliver is out of the ICU and back in Cancer Care. His respiratory needs are significantly less and he is breathing comfortably with little support. He had his first full dose of chemo on Wednesday and has tolerated it well. The most exciting news is that Oliver hasn't had a platelet transfusion in over 3 weeks and his platelets were at 75,000 today! Yesterday they were at 37,000 so he must have been busy making platelets all night last night ;) Oliver's IL-2 is almost normal now, and his ferritin (iron) is FINALLY measurable! In 3 months of testing Oliver's ferritin level has always been so high that the machine reading it can't even give it a number...the machine measures up to 10,000-a normal level for an infant is is between 25 and 200. Also, we are much closer to transplant than we thought...Oliver has to be at least 4 months old to get the bone marrow transplant, and he will be on May 28th. We have our first appointment to discuss all things transplant on Tuesday.

We are really excited about these positive changes for Oliver! He is continuing to entertain all of us with his smiles and the sparkle in his eyes!

Feeding tube blues

Oliver is still on too much respiratory support to be allowed to return to cancer care, and his steroids have caused him to be grumpy! He is so opinionated about being held it's almost comical! I had to put him down to use the restroom and while he was alone he screamed and pulled his feeding tube out! Poor little guy had to wait hours for the tube to be placed and an x-Ray to confirm it was in the right spot...which means he was hungry by the time we could safely use the tube. Although placing feeding tubes is no fun for babies, he did seem to enjoy having it out for a bit :)

One Tough Cookie

Oliver is more awake today and even though he still isn't feeling well, he is doing his best not to complain about it. He has started showing signs of being irritable which is comforting to me because that's how he should behave on steroids! 

The pulmonary team thinks Oliver's increased respiratory rate might have been from a small amount of aspiration (if he had reflux or spit up the high flow could push the fluid into his lungs) so they changed his feeding tube from ng to nd (basically they just pushed the tube in a few more centimeters so his breast milk bypasses the stomach and he can't spit up-making aspiration far less likely). He had an abdominal X-Ray this morning to check the placement of his feeding tube and is sleeping through his blood transfusion right now. 

We are still in the PICU, and probably will be through the weekend. He started weaning from the high flow and we turned his oxygen down to room air. So far he seems comfortable :)

Back to ICU

As many of you know, we've decided to leave our home in Sandpoint. Over the last couple of days I've been in Sandpoint helping Sean pack. I got back to Seattle children's yesterday afternoon and Oliver looked great! He was so happy to see me-he looked at me and smiled for 20 minutes or so before falling asleep. During his nap his respiratory rate increased and he was breathing about 100 to 120 breaths/minute. This had the doctors and nurses a little concerned and when his oxygen level started dipping into the 80's the doctors decided to call the rapid response team to come and look at Oliver. A PICU (Pediatric ICU) doctor came to see Oliver as well and everyone decided it best to move him down to the pediatric ICU for closer observation through the night. Within a period of about four hours Oliver went from looking great and smiling to feeling so miserable that he didn't even cry if his pacifier fell out or if he wasn't being held. This had me very concerned because this is not the way Oliver usually behaves- especially when he is on the steroids. Oliver did not have a fever, but there was still concern that he may have been exposed to a virus so he had a nasal swab, blood lab work and urine sample taken and so far nothing has grown to show any sign of bacteria or virus. Through the night he slept well and his respiratory rate stayed close to normal. He has been extra sleepy today and is still on extra oxygen and high flow. He can not return to the Cancer Care floor until he is on a lower level of high flow.  Please keep those positive thoughts coming our way!!!

Something to think about...

Walking through the all too familiar halls of Seattle Children's Hospital this morning I passed sick children. I passed parents, siblings, grandparents, friends and other visitors. In the elevator I rode silently with parents who had obviously just begun their journey here. I knew because they were silent, and their caregiver badges only had a couple daily stickers.. I felt the urge to tell them it would get easier. I wanted to offer them some sort of reassurance but I couldn't. I don't know why they are here, or what the child they love so dearly is facing.

As we stepped off the elevator and parted ways I thought about all the families here.
All the paths.
All the love...and the fear.

In the midst of it all I watch parents running down the hall juggling balloons and stuffed animals while their child sits in a wagon with a huge grin and holds on tightly. I see moms reassure children who have spilled their coffee (probably MUCH needed and over priced coffee at that) and fathers who are racing their sick kids down the hall on bikes while dragging a pole that is providing their child's life saving medications.

It struck me that the friends and families supporting the children in this hospital never imagined they would end up here. In just about every story I've heard they families didn't expect to be at Seattle Children's. I just wanted to remind all of you to hug your loved ones a little tighter every once in a while. Be patient. Don't forget to say I love you...and to read that bedtime story again (even if you already know it by heart). One of my favorite memories from my childhood is my dad reading me the poem 'Winkin, Blinkin and Nod'...he read it every time I asked-and I still know it by heart! :) We never know where life will take us...hold on tight. Smile and laugh and sing and dance. The dishes can wait.

Pictures!!!!!