August 27th Update

One of the things that I did not want this blog to become is a depressing destination. Like I mentioned in the previous post, we need to spend our days enjoying life while we can. That applies not just to our family, but to all of you as well. I do think it was important for the previous posts to convey the gravity of our situation, but I have no intention in making this blog a eulogy. On the contrary, this blog will continue to celebrate Isabella's life. We will continue to provide updates as appropriate and other pertinent information to spread more knowledge about pediatric brain cancer. With that said, I can't guarantee there won't be the occasional rant or stress release post ;) .

And with that, we do have some updates.

In the previous post, I mentioned that we felt that our doctors have given up on Isabella. However, this wasn't completely true as her primary oncologist is actively working on a few treatment options. We'll have to weigh these options soon and even though we don't quite know what we're doing yet, we take some comfort and relief that things are being done.

Since most of the options involve chemotherapy, we have scheduled Isabella to have another mediport put in her chest. The mediport is a central line that allows medication to be injected directly to the blood stream and also facilitates blood draws without having to poke her arm over and over. This is such a shame, too, since we just had her mediport removed in April.

Finally, Isabella starts up school again next week and she is super excited to go back. Today, we met with her new teacher and other school staff just to go over some of the precautions and logistics for Isabella to go back. Julianne and I have some pretty big apprehensions about Isabella in school, but I must admit that the school is doing an amazing job of accommodating her, and for that, we are extremely grateful.

Moving Forward–One Day At A Time

Isabella’s oncologist returns from vacation today and we will be meeting with her tomorrow to discuss any treatment options.  It has been over a month now since the recurrence was detected and we are frustrated that we still don’t have a course of action.  Julianne and I get the feeling that the doctors have pretty much given up on Isabella, which is difficult to fathom, but I guess that’s the reality of the situation.
One of the ways that we’ve taken matters into our own hands is by adjusting Isabella’s diet.  I mentioned in a previous post that there has been anecdotal evidence (but no human trials) that a strict low-carb diet may help control the growth of tumor cells and in some cases even shrink the tumor.  So for the last few days, we’ve been severely limiting Isabella’s carb intake, and from those of you who’ve tried the Atkin’s diet, you know how difficult it is (we couldn’t even have cake for Nathaniel’s birthday yesterday).  But amazingly, while on the diet, we’ve noticed that the her right hand has actually improved from a couple weeks ago, and that she has regained some strength in her right foot.  We’ve also noticed that mentally, she is sharper than she has been for a couple weeks.  Since we’re only a few days into the diet, we’re still trying to find the foods that Isabella likes, and the toughest part is when she asks for certain foods and tell her that she can’t have them.  At this point, we don’t even know if it really is helping, but while Isabella is willing to eat what we give her, we’ll try it.
One thing I should mention is that from looking at Isabella, you wouldn’t think much was wrong.  You’d notice her walk is slightly off and you may notice her right hand is weaker, but other than that, she looks like a regular kid.  When you think of a dying person, you think of someone confined to a bed, hooked up to a bunch of tubes and monitors.  But Isabella still runs around, plays, laughs, and sings.  Even this morning, when she woke up, she was just all smiles while the rest of us begrudgingly got ready for the day (the rest of us are clearly not morning people). 
And to some extent, our mindset is the one thing that we can somewhat control.  As a family, we’ve decided to enjoy how many days there are left instead of wallowing in self pity.  There’s plenty of days for sadness, but we know there are just a limited number to be happy, so why waste those days in sadness?  Of course, that’s easier said than done since some emotions are harder to control than others.  When I saw Isabella’s smile this morning, I was sad that I will not be able to see that smile grow up, but then I caught myself and smiled myself, appreciating her smile in all her beauty.

A Note From Camp Sunshine

One of the reasons that Camp Sunshine was such a tremendous success is that they have a large number of volunteer camp counselors.  These counselors are mainly teenagers and college students who committed a week of their summer to spend with kids.  There were two amazing things about the volunteers:  first, was the sheer numbers.  It seemed as if there was a dedicated counselor for each child.  Each child felt special because they had large chunks of time from the volunteers.  Second, the quality of these volunteers was tremendous.  All of the volunteers were genuinely attached to the kids and committed to making sure their time was special.  It choked me up on the final night of camp to see many of the volunteers crying, even though they were with the kids just a few days.

The note below is from Isabella’s favorite counselor.  She spent a lot of time with Isabella and was instrumental in making sure the camp recognized Isabella’s birthday.  You can tell from the note the quality person that she is – Isabella was definitely lucky to have her as her friend.

Hello!
   My name is __________ and I was a counselor at Camp Sunshine this summer.  I regret never introducing myself to you or your wife but maybe you remember me.  I had the pleasure of being an ages 6 to 8 counselor and was so blessed to have met your lovely daughter, Isabella.  I remember thinking how much she reminded me of myself, in that she takes a little while to open up to new people. I think that's why I immediately, in a way, attached myself to her because I am the same way.  I wanted to make sure that she had one of the most amazing weeks and hopefully she did :)

    Being that I am not a morning person, the mornings at Camp were considered very early in my mind.  But as the week progressed, I woke up every morning looking forward to seeing Isabella's half toothless smile and playing all sorts of fun games with her.  She beat me in everything we played; checkers, candy land, tether ball etc.  Isabella is one smart little girl.  When I found out that she would be celebrating her seventh birthday at Camp, I went to the lead 6 to 8 counselor and asked her if we could do something special for such a special girl.  So we made her a card that we got everyone to sign, and a birthday crown.  We even had our class sing to her during arts and crafts one day.  She lit up as we presented her with the birthday crown and the cutest smile spread across her face as all the attention was focused on her.  That is one of my favorite memories all week.

  Although there are countless other memories that I made during that week with Isabella at Camp, it would literally take me a few days to write them all down.  I can't really explain in words how it happened, but your daughter has truly changed my life.  Despite her situation, she always had a smile on her face and had a certain glow about her.  I am having trouble finding the right words to describe how much of an impact she made on me.  But I just wanted to take the time to let you know that I am thankful beyond words that I had the opportunity to meet your daughter.  She will always have a place in my heart and I will always be thinking about the fantastic memories we shared at Camp Sunshine.

   I signed up to follow your blog and have been receiving the updates.  I am praying for Isabella, as well as you and your family.  I have faith and hope in each day that a miracle will come. 

I attached some pictures that I took over the week at Camp, some with Isabella and I, and some with her and my friends.  But I thought that maybe you would enjoy seeing them.  In one of the pictures Isabella is drawing a picture...she asked me how to spell my name because she was drawing me and her holding hands.  I hung the picture on my wall because it makes me smile every time I see it (I also included a picture of it hanging on my wall.)

Happy Birthday Nathaniel!

Today is Isabella’s little brother’s third birthday!  Head over to our family web site to see a couple short videos for Nathaniel.