We're back...in treatment again.

“You take the good you take the bad you take them both and there you have…the facts of life:”

The Good:

Over the past 4 weeks (ever since mommy finished school for the year and daddy finished his PhD) Eli has been developing by leaps and bounds and has become, well the happiest, most active, most loving little boy we could imagine (yes we are attributing all of this to our (his parents) renewed and devoted attention). But seriously, it has been amazing to watch the changes taking place within our child.

To begin: he has finally found out just how fun a playground can be, slides and bridges and stairs and sand and rocks, and rocks and did I mention rocks. He now loves to climb the stairs, jump on the bridges and slide down pretty much any slide. Speaking of slides, on our recent and much needed vacation to Hawaii, Eli FELL IN LOVE with the water slide. He must have gone up and down it a million times. When I asked if he wanted to go on the bigger water slide, he grinned his biggest grin…and then was told he was too small. If you ask him, he will tell you all about it.

His imagination and desire to interact with other children has blossomed. This combination has made for some beautiful interactions between he and others as well as some challenges for us…like how to explain that Dora and Little Chick and Elmo may not make it over for dinner tonight.

As always he is singing, only now he makes up words to fit whatever is going on. He is still mesmerized by music and continues to practice playing the piano while singing any number of songs. He is running (jogging) and wants to jump so bad he can taste it! He loves to give me kisses when I hurt myself, hugs when he thinks I may be sad (his excuse) and more kisses upon request. His diet is 90% fruit and veggies and we are thinking he may as well just go Raw at this point! Soup and bread are the only other real staples and they keep me from fearing mal-nutrition.

He is, simply put, blissfully happy. He is pain-free and his hydrocephalus is better than it has ever been (since he was probably about 6 months old). His hormones are all properly regulated. Therefore, I imagine he is feeling better than he has EVER, ever felt. We could not be happier.

(The top-right is a self-portrait Eli took of himself (a.k.a self-portrait) and a little picture of Eli enjoying playing in the ocean in Hawaii...he never wanted to get out!)

The Bad:

(top picture was taken 7/8/09 compared to bottom picture taken 3/30/09 prior to collapse the tumor collapse on 5/4/09)

While often no news is good news, in this situation no news was “we are too exhausted to talk about it anymore” news.

Our most recent update of Eli’s tumor showed that it has collapsed. We received many congratulations, but as we feared it was not to last. About 3 weeks after the collapse we had another MRI to see what really happening in there. The MRI showed that that tumor had refilled/grown to about 1/3rd the original size. Not totally depressing, but not good either. Eli’s oncologist told us he wanted to wait and do another scan in 6 weeks. His hope was that the tumor would stabilize and that we could leave it alone for a while. So we went to Hawaii and put the entire thing out of our head (yea!!!).

This last Wednesday Eli went in, once again for another MRI…45 minutes later the scan revealed a tumor only slightly small then when originally diagnosed (5.1 cm verses 5.6 cm tall) . We were sad, but not shocked, not disappointed. To be totally honest with all of you, this is the reality of Eli’s disease. It may shrink and then re-grow almost overnight. Or it may disappear from all sight for 20 years only to reoccur once again. While Eli’s battle will not be a devastating one –comparatively speaking (for we will do everything in our power to prevent any additional morbidities and trauma) it will be life-long. One day, we hope very soon, the tumor will disappear from sight, but the reality of a tumor free boy will only be realized after it has failed to reoccur 25 years later. Of course the chances of reoccurrence will dwindle as the years pass…but now I am getting ahead of myself.

One light in this darkness is that we will be able to continue to try and treat the tumor using intracavitary bleomycin (chemo injected directly into the tumor without any systemic effects). We feared that when the tumor collapsed the little straw-like tube that had been surgically inserted into the tumor may have slipped out…but it is still there and the system is still closed and leak-free.

The Reality:

Eli started chemo treatments again today. He did great – cried for a few minutes, mainly in anticipation and then was his chatter-box self seconds later. He will have treatments 3 days a week for the next 3 weeks. After that we have no idea what we will do if the tumor is still “standing.” We may try for another 6-9 sessions of chemo. We may decide for a resection (cut the %$@er out). We have no idea. We are however, so thankful to have THOUGHTFUL, intelligent and compassionate physicians working with us. Doctors who treat Eli as an individual case and not just another number, another tumor surgery under their belts. As usual we will do our best to preserve his beautiful brain, while conquering the cranio. We also know that we will be working to kill this tumor for several months and years to come. We unknowingly put false hope into many of you with our last email and success story…sorry. We hope for better success in the future. Hope is important and powerful, so please keep hoping for us, for Eli. Reality is temporary, always changing…so we’ll just hope it changes fast and in the right direction.

Thank you as always for your love, support and encouragement. Every email we receive boosts our spirits…even if we fail to respond. So thank you for your unsupported support!

Our love

M, D and E

Hooray! He finally caught a break.

The tumor has collapsed!!

Collapsed mood = collapsed tumor. Whew!

Over the past week we were becoming increasingly concerned about Eli. His chemo-treatments were getting harder for him, seemed more painful and he had headaches afterward. Additionally, because he had been back at school, he had contracted a cold, had vomiting and diarrhea for 4-5 days and that was followed by cough and general runny nose and congestion. All of these factors would make anyone sad and depressed, and we began to see such signs in Eli. We weren't quite sure what was going on but it was really starting to seem like he had reached his limit and was becoming depressed. He cried for almost no reason, he was easily distracted and had lost interest in activities he used to enjoy. One evening, after telling us all day that he did not feel good, was tired, was sad, he said, "Mommy I feel terrible." Wow!!! What 2 year old uses such words? We were really concerned and when we went in for chemo on monday we talked to the social workers about books we could get and things we could do to help improve his mood.

Well, as is usually the case with Eli, there was an underlying physical reason for his mood: we didn't know it yet, but the tumor in his head was beginning to collapse and was causing him some real discomfort. When we went in for his treatment on Monday we talked about our concerns with his oncologist, Dr. Foreman, and we decided to continue with treatment and start drawing a little more fluid off the tumor cyst to try to drain it. As we had seen recently, when the fluid was being drawn off the tumor, Eli was clearly VERY uncomfortable. Then as Dr. Foreman began to draw off the extra fluid, we saw blood in the line! There was a stunned silence - other than Eli crying. What the hell was going on? Then things got really scary. Eli started slurring and saying his mouth hurt and he got very pale and and suddenly weak. Everyone went in to crisis mode and we quickly went down to get the CT scan in the picture above. The CT was done as a precaution to make sure that there was nothing terribly wrong with his brain. We had no idea what had happened, nor did we have any idea how encouraging the results of the scan would be.

When we got back upstairs the nurse practitioner gave us the wonderful news that the tumor had collapsed! We had unexpectedly already drained all of the fluid and the cyst had completely deflated. The picture above shows 4 slices through Eli's head comparing a CT on 4/15/2009 (left) to the one on monday 5/4/2009 (right). I think it is quite obvious that the enormous egg which just weeks ago inhabited his skull has been thoroughly squashed. This seems to explain why he had been so uncomfortable during this most recent round of chemo: the shrinking tumor was messing with his brain (pulling and moving things around) and causing him substantial discomfort.

We are so relieved and happy. The tumor is not gone, but the bulk of it, which has caused so much damage, has probably been eliminated. This was the best outcome we could have hoped for (at least up to this point) for this treatment. We know it is unlikely that this will cure him of the tumor but it is a very slow-growing (non-malignant!) tumor and it will give Eli some time for his brain to develop before he has to have surgery or radiation to remove what is left.

Now we just wait and get the tumor scanned every so often to see if it's growing. No more chemo (no more "counting with Dr. Foreman," as Eli says), we won't be at the hospital 3 times a week and hopefully we can live relatively normally for awhile. Eli will have an MRI in three weeks to give us a really good picture of what is really left of the tumor. We will have a better idea then of how long we'll wait before the next scan and what the likelihood is that the cyst will re-grow anytime soon.

Eli is happy and seems to be feeling much better today. Hopefully he will continue to feel better and better. Maybe we can take the summer off from the hospital and really enjoy being back in Colorado, together.

Meagan, Jacob and Eli