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!!!