Sunday, September 21, 2014

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!

Wednesday, August 13, 2014

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!!!!!

Wednesday, June 25, 2014

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. 



Tuesday, June 10, 2014

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. :)

Tuesday, June 3, 2014

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! 

Sunday, June 1, 2014

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! 

Saturday, May 31, 2014

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!!!

Wednesday, May 28, 2014

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! 

Friday, May 23, 2014

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!

Thursday, May 22, 2014

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. 

Wednesday, May 21, 2014

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!

Monday, May 19, 2014

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 ;) ;) ;)




Friday, May 16, 2014

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!

Saturday, May 10, 2014

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 :)

Friday, May 9, 2014

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 :)

Thursday, May 8, 2014

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!!!

Saturday, May 3, 2014

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.

Sunday, April 27, 2014

All genetic tests are in...

We got the final-long awaited-test results back from Cincinnati and they were all negative! This means we still have NO scientific reason for Oliver to be sick. His Doctors are still standing by his clinical diagnosis of HLH but whether it's infectious HLH or genetic HLH has not been determined. The chemo Oliver is getting is the same no matter what kind of HLH it is, but genetic HLH is only cured with a bone marrow transplant Sean and I were waiting for these test results to help us decide if we can keep our Sandpoint home. If Oliver needs a transplant we will likely be in Seattle for at least 1 1/2 to 2 years. Even without the positive genetic test result, our HemOnc Doc told us she is confident he is headed towards transplant. This is difficult news to face on so many levels. Obviously, no one wants to see a loved one go through transplant. It's scary and intimidating Also, having our home in Sandpoint made it feel like this was temporary. Like Oliver would be better soon. We love our home, and where we live. It is hard to accept that we won't be bringing Oliver there...and leaving all of our friends and family...Jack and Jillian's school-there are so many things we are going to miss, but it's just not realistic. We can't afford to be here with Oliver and keep our house back home...

Oliver doesn't do well on his steroids. They make him feel hungry and irritable. He gets the steroids on Wednesday, Thursday and Friday which makes him extra cranky by Friday and Saturday night. He is feeling SLIGHTLY better today, but he has not accepted being put down since Thursday! He is on my chest as I write this...

Oliver spiked a low fever a couple days ago. Fevers are taken very seriously around here since they are often the first marker of infection. A blood culture was done and antibiotics were started. After 48 hours nothing had grown in the culture and we stopped antibiotics yesterday morning. The fever has not returned ;)

As if being fussy wasn't a bad enough side effect of the steroids, they also make Oliver's heart rate drop significantly. It always comes back up on it's own, but you should see the looks on the nurses faces when they walk by his room and see the number on the monitor! Often a nurse that doesn't know Oliver will see his monitor and rush in to check on him only to learn that this is 'normal' for Oliver He also had a few episodes of his oxygen saturation dipping, so his respiratory Doc came to see him. He is still on the high flow to help him save his energy for other things (like growing). We discussed weaning him off the high flow, but Sean and I feel that it is keeping Oliver comfortable and the Doctor agreed. He ordered a lung x-ray since we haven't had one in a while-just to see how much room he has to work with and make sure there was no fluid in his lungs. The x-ray looked great and showed his lungs were clear. One thing we didn't expect to see was that his shoulder bone looked a little fuzzy...a cat scan of the shoulder was ordered and it appears that Oliver broke his right shoulder about a month ago. It has healed and he is using the arm appropriately. This was heart breaking to hear. Oliver is so used to pain that he has learned to manage it and never even let on that it was bothering him. There has been no trauma to his arm (or body) and no one can think of a single reason for this to have happened. I think we will be doing a full body x-ray this week to make sure there are no other injuries we need to look at.

Oliver continues to surprise us with his platelet levels and made 9,000 platelets in his sleep! His platelets are at 39,000 today! 

Despite all of this, Oliver is stealing hearts. He loves to look at books and balloons, he smiles like crazy and really loves being sung to! Lucky for me he doesn't know the difference between good and bad singing ;)


Wednesday, April 23, 2014

Chemo today...

Oliver was supposed to start getting chemo every two weeks now, but his Doctors have decided to continue on a weekly dosing schedule for the next 4 weeks so Oliver is scheduled to get chemo this afternoon. He has been as happy as a little clam for the last few days...I hope he continues to feel this good after chemo.

He has decided he doesn't like his baths anymore, but he really loves the warm blankets and massage that follow the bath :) He is really starting to interact with the world around him. He smiles at everyone and enjoys looking at books. He also really likes being sung to...he doesn't know the difference between good singing and bad singing which is great since I am usually the one singing to him ;)

We are keeping a close eye on his PICC since it's been in about 6 weeks. Once a PICC has used a main vein that vein is destroyed and can not be used again. His right arm has already been used, and his left arm was attempted unsuccessfully...so now the PICC is in his left leg. That means the only limb left for a PICC line is his right leg. If they attempt to place the PICC in his right leg and can't get it he will have to go back to IV's. This is not desirable as they have to be changed every few days and I don't think the chemo can burn the vein if it's not big enough, but I'm not sure about that...anyway, we are all wanting a more long term access like a Hickman line but Hickman lines are placed surgically and Oliver would need to have platelets in the 50,000's to tolerate this procedure. Yesterday, 30 minutes after his platelet transfusion we checked his platelet levels-33,000. This morning they were down to 22,000. Not a big enough bump to get a Hickman line.

This is what a Hickman line would look like:







Saturday, April 19, 2014

More of the Same

Good morning! Oliver's platelets and crit are both in the 20's so he won't be needing any transfusions today. His potassium levels have been elevated for the last couple of days, which can be hard on your heart. Yesterday Oliver's heart rate was dipping into the high 80's and low 90's so last night they did an EKG. I'd be lying if I said this didn't have me a little worried. I know they were planning on repeating the EKG soon anyway, but they don't usually do these kind of tests at night unless they are very concerned. I don't know what the results of the EKG were, but I know they are giving him more lasix (not for it's intended purpose, as a diuretic, but for it's side effect of depleting your potassium). He was pretty unhappy last night unless he was being held. I felt so helpless 3 blocks away and unable to go comfort him. Thankfully the nurses all took turns holding him and shortly after midnight he was out like a light and slept until morning.

We are anxiously awaiting those test results from Cincinnati...should be here by the end of next week. So many things are hinging on those results. Will Oliver need a bone marrow transplant? How much longer will we be here in Seattle? If Oliver needs a bone marrow transplant we will probably have to leave the home we love so much. Not only would we need to stay in Seattle for 6-8 more months, but when we are able to go home Oliver would have to stay away from things like freshly turned soil and livestock. Both of which are right out our back door.

For now we just focus on what's ahead of us today. We focus on Oliver, and keep giving him reasons to smile...because that brings joy to all of us. :)

Friday, April 18, 2014

I gave it a try...

Turns out this blog is a much better way to tell Oliver's story than using the GoFundMe site alone, so we're back to blogging! In case you have had difficulty following along on the donation site I have copied all of the missed posts to the end of this entry.

Oliver is doing well today...he was a bit gassy when I was there, so he needed extra snuggles to calm down and fall asleep. We are constantly getting compliments on how happy he is! He is smiling ear to ear every day now. We are trying to give him more of a schedule, which is surprisingly difficult with all the specialty doctors stopping by to see him. He does have a bit of a routine though. He wakes up in the morning around 7:30 and after snuggling and waking up slowly we get ready for his bath. He generally enjoys the bath as long as the water is VERY warm. We have to take off his leads that monitor his heart rate and respiratory rate and his pulse-ox that monitors the oxygen saturation of his blood. Next, his PICC line has to be wrapped up like a cast so it is not exposed to the water. We leave his nasal cannula and feeding tube hooked up and wheel the bath tub out to his bedside. He has to have a bath every day to prevent his skin from breaking down from the medications he's on. After his bath, the nurses bring in warm towels (this is CLEARLY Oliver's favorite part) he gets wiped down with chlorhexidine wipes to remove any potentially lingering bacteria from his skin. He gets weighed and we measure his belly, then we put all of his wires back on (leads and pulse-ox) and he gets a massage. By now he is snuggled in warm blankets and only the part of his body that is getting worked on is exposed-he almost always starts to fall asleep during this part :) We have to do some stretches that the physical therapist taught us to keep his arms and legs loose since he is snuggled up so often he hasn't had a chance to really use his limbs. After all of this Oliver usually stays awake a little while longer and socializes with anyone who looks his way. Rounds are usually between 11:00 am and noon and any procedures, tests, changes to medications or transfusions are scheduled. Oliver often sleeps until mid afternoon and will have another period of being awake for a couple hours. He is so charming and content, I think he is the most tolerant person I know!

We are STILL waiting for the HLH tests from Cincinnati to clarify what form of HLH Oliver has...we will be getting chemo every two weeks now-for the next 21 weeks no matter what, but if Oliver's HLH is genetic he will need a bone marrow transplant to cure it. Many of you have offered to be tested and we are so very appreciative, however the test is expensive and it is not likely that we would find a good match for Oliver on our own. The best way to find out is to join a bone marrow registry like Be The Match. It's super easy-go online, fill out a quick form, they send you a packet in the mail with 4 swabs-you swab your cheeks and send it back in the envelope they provide and you're done. If you're a match to Oliver (or anyone else) they email you and you have the option of donating at that time. I have been on the registry for over a year and have not been contacted, but I would love the opportunity to donate if it ever came my way!

Jack and Jillian have been with us for a few weeks now. They are adjusting well but miss their friends dearly. We have found some fun (free) things to do here in Seattle-their favorite spots so far were the zoo, the Burke Museum and the gum wall-YUK!!




















TODAY on GoFundMe
Oliver got another chemo dose yesterday, and platelets today. He is still dazzling everyone with his toothless grin and starting to take an interest in the world around him. We are still waiting for the HLH tests from Cincinnati to determine if Oliver's HLH is genetic or infectious...in the meantime Oliver will continue receiving his chemotherapy treatments. Through all this he wakes up happy every morning and is almost always content. Given all he has to complain about-he rarely fusses...my inspiration!

APRIL 12 on GoFundMe
Oliver had a wonderful morning, he made platelets last night (up 1,000 since yesterday) and he's been smiling at all the nurses! :) No transfusions or tests today...just a lazy Saturday napping in my arms while Jack and Jillian watch Saturday morning cartoons. Yes, we are making Oliver's hospital room feel like home!

APRIL 8 on GoFundMe
Oliver slept well last night, I got scolded by the night nurse for falling asleep with him, but it was worth having those extra snuggles! He had another abdominal ultrasound yesterday to check on his liver and spleen & to look at his gall bladder to make sure he didn't have any stones or 'sludge'. I'm not exactly sure what 'sludge' is...but it sounds less than desirable. The ultrasound showed no changes in his liver or spleen since the ultrasound a month ago, and no stones or sludge in his gall bladder. There is slightly more fluid in his belly, but the quality of the fluid is also...you guessed it...unchanged. I'm beginning to sense a trend here. Day to day things seem to stay the same for Oliver. He gets transfusions some days (platelets today) and we continue to run lots of tests-I pray that things start moving quickly in the direction of health for Oliver! 
We have a care conference this afternoon with several of Oliver's doctors. I hope to find out more about his MRI results, learn what exactly is happening with his heart and more about the heart medication he started last week.
We are taking a tour of a school here that teaches students who have a sibling in Seattle children's. I am optimistic that this would be a good way for Jack and Jillian to meet other kids and keep up academically...Thank you to everyone who's helped us make it this far, I couldn't imagine not being here for Oliver through this and we're still able to stay because of the generosity of our friends and family-and even people we've never met! Oliver is truly loved.

APRIL 5 on GoFundMe
Oliver did not have any transfusions or tests today, he just got to be himself :) He is on the transplant list for bone marrow and we are checking to see if Sean, Jack, Jillian or I are possible matches. The type of HLH Doctors think Oliver might have is Familial HLH 5. Many of you have asked what this diagnosis means-and there is not a lot of good information about it on the internet because it is so rare...I found this website that describes it quite accurately and is easy to understand...

http://www.hlhjournal.com/2010/04/hlh-a-simple-description/

Thanks to everyone who is keeping Oliver (and us) in their prayers!

APRIL 3 on GoFundMe
Oliver is increasingly uncomfortable and his poor belly is bigger than it's ever been. Because of this it is becoming more difficult for him to fill his lungs so he is back on high flow through the cannula. Also, the MRI results came back and although Oliver's brain is slightly smaller than it should be there are no signs of disease in his brain-thank God! No transfusions today, but we had to increase his pain meds a bit because he's so uncomfortable. Poor little guy!

APRIL 2 on GoFundMe
Sean stayed the night with Oliver in the hospital last night. The nurses brought in a swing for him and he seems to like it. We can't help but feel like we are in limbo just waiting...Oliver still hasn't been scientifically diagnosed and it will be weeks before the test results are back. We are going to continue giving steroids and chemo for the time being. Feels so strange giving our newborn baby chemo. He is scheduled to get another dose today as long as his liver can handle it. *fingers crossed that we're doing the right things to help him get better*

Oliver has a big day today-he had his chemo this morning and will be having a platelet transfusion and MRI of his brain this afternoon. I do my best to be strong, but every once in a while I can't help but be sad for my tiny baby boy who's life didn't start out the way we intended. He is a tough little cookie and although I wish he didn't have to fight so hard I am unbelievably thankful he is fighting this disease.

MARCH 31 on GoFundMe
Our family has a tummy virus that has prevented us from spending time with Oliver for the last couple days. We miss him terribly and hope he isn't feeling abandoned. I talked to his Doctor today and she told me they changed Oliver's platelet transfusion threshold to 10,000. He received a platelet transfusion yesterday, in the arms of a volunteer who stepped in to take our place since neither Sean or I could be there. One of the HLH tests came back normal...there are two more tests in Cincinnati that should be back in about 3 weeks...also, the results from Oliver's second EKG came back, an ultrasound was done and Oliver's cardiologist said the wall on the left side of Oliver's heart is thickening. She will likely recommend medication to help his heart continue to do it's job without being overworked. I'm not positive, but I think she said the medication is a beta-blocker...I was hoping to get through this without the cardiologist getting involved...so far his brain and his heart have not attracted any specialty Doctors. Keep praying for this baby of ours!!!

MARCH 29 on GoFundMe
We had the best day yesterday! Oliver was feeling well, awake & alert. No tests, no transfusions...a great day to be a baby. :) I slept at the hospital again last night. Oliver sleeps so well we actually have to wake him to change his diaper! Sean is sick-so far he's the only one in our family - here's hoping no one else gets it!

Oliver's platelets went down to 10,000 today and his crit was low so he needed another red blood cell transfusion. No new tests today...we are hoping to see results from one of the HLH tests on Monday or Tuesday...fingers crossed we will get Oliver figured out soon so he can be home with his family! We appreciate all of the positive thoughts and energy that have come our way from our friends and family!! Thank you!

MARCH 28 on GoFundMe
Good morning! Oliver is doing great today, I slept with him in my arms most of the night and we both woke up happy...yes, it is going to be a fantastic day!

MARCH 26 on GoFundMe
Oliver is doing well today, he is getting an anti-nausea medication right now and will have another dose chemotherapy afterwards. He hasn't had the echo yet-it may be pushed back another day or so and Oliver's doctors have decided to hold off on the MRI of his brain for now. 
Sean's mom flew in from California and is enjoying bonding with her newest Grandson. Jack and Jillian are making friends here at the Ronald McDonald house. We are so thankful for all of the support, prayers and well wishes!