Monday, March 9, 2009

Each time I go there, my heart breaks by just that much more ...

Children's Hospital of Los Angeles, in case you were wondering. My guess is you probably knew that though. Today was a sad day. Zoey is fine. Home ... but fine. Her ANC actually dropped. Should have foregone the Bactrim again this weekend. Won't make that mistake next week. It is also entirely possible that the chemo they gave her in her lumbar puncture, although the one they chose is not usually suppose to lower ANC, in her case maybe it did. There she goes again, doing things her own unique way. All the rest of her numbers are great. White: 4.07, Red: 4.62, Hemoglobin: 14.3 and platelets: 256,000. Then the kicker, ANC 530. Down from 690 last week. I really prepared myself for her ANC not being 1000 but I didn't dream it would go DOWN. Saw her doctor in the hallway briefly. He continues to assure me she is fine. Me, I worry. Just my nature. He said he has had kids take 3 months before they are ready again. 3 MONTHS!!! I so was hoping for a normal summer. Normal for us at least. Well, I left the office, not nearly as dejected as last week. I left knowing at least we were going home. So many are not. The outpatient clinic today, primarily the Day Hospital, held things that I wish no one to be a part of. I left that clinic feeling grateful and guilty at the same time. Strange combination, I know. From there Zoey and I headed to the 4th to visit some friends. First stop Jayden. Our fellow AML patient and former roommate, who is battling a nasty blood infection. They haven't been able to get a handle on it yet though. Hopefully the anti-fungal they are going to try will do the trick. Next a quick hello to Ricca, another AML buddy, who looked tons better then the last time we checked in on her. Her spunky little self. Poor baby hasn't been out in like 2 months. From there came a few reminders of the fragility of the floor. Devastating news about a fellow Down syndrome darling who has relapsed and will go to Bone Marrow Transplant, I believe her mom said, next month. I was in shock. If you saw this magical child you would think of Zoey. Whole head of hair, constant smile and now...a bigger fight ahead. A donor has been found in a sibling so that is one major hurdle won already. All I can do is continue to pray and pray. What else can we do? News also came of a little guy who I knew had relapsed but now it looks like he will head to the BMT unit as well. I was so hoping that it wouldn't go that way. That unit is a whole new ball game. We all know that on the 4th floor. Those kids are warriors times a 1000 percent. This sweetie didn't find a match in his sibling, so a donor will have to be found in the National Marrow Bank or during a drive. This particular baby, I call him baby because I don't think he's quite yet 3, still a baby, still so much left to do, well, he happens to live in very close proximity to us and the community has come together to sponsor a drive for him. The drive happens to be at the school where two of my girls graduated from and where this little guy's daddy works. I would like to take this opportunity to talk to you about registering as possible bone marrow donor. The process is easy. Usually the initial test is a mouth swab and then it goes from there. Simple but a potential selfless lifesaving act. I linked to this site last year, knowing full well then that this could be a possibility for us or rather our sweet Zoey and even if Zoey was not at risk, I would still feel the exact same way. Almost ten years ago we lost a family friend to AML and although things did not end up the way we all had so prayed for it to, she did find an international donor. We have to do something. This thing, this thing called cancer... we need to make monumental steps towards a cure. Although research has come so far, we still have so much further to go. Today I decided, even in the midst of seeing Zoey to a cure, I cannot just wait. Everyday, be it leukemia, neuroblastoma, Wilms Tumor, Medulloblastoma or any other pediatric cancer, we have got to get to a cure for all these kids. We have to. My heart just can't take much more of this. We must reach beyond our comfort zones and dig deep. We have to do our part for all the precious children I have come to know and love. Kids like: Thomas, Pablo, Madison, Ricca, Jayden, Christian, Reuben, Gabriel, Faith, Sol Merie, Kai, Christopher, Sarah, Emily and Angel Luke and still yet, for the thousands I don't know. All fighting. All battling just to make it back to the childhood they so deserve. Please take the four minutes and see for yourself why we cannot sit idly by and do nothing. Pause my blog music to listen.

10 comments:

Anonymous said...

Home.
I'll do the test, will call to get particulars. XO's to you and Zoey, Christi Harman

rebecca said...

Sorry to hear her numbers weren't higher, and that so many of her buddies are having a tough time.

Lacey said...

My pediatrician constantly ask's why we keep making friends with kids we may lose. How can you not, you go through the same things, and you fight for each other.
I've thought about getting on the registry before, but you've pushed me to get it done, thanks for that. Hugs from Lacey and Jax

MJMILLS said...

Ugh! sorry to hear that about her numbers. im sure she will soon be there! like you said, in her time she'll be ready!!! fiesty lil bugger! i cant imagine the suffering these kids endure! my son can't even handle a blister! SHEESH! keep your head up mom!

Colbert Family said...

So sorry her bone marrow wasn't up again. I know when Abbey's numbers were so low for a long time they decided to stop the bactrim altogether and start her on mepron (same benefits as bactrim). After they switched her, our doctors really felt that the bactrim was what kept her numbers so low for so long. I am sure your doctors know exactly what they're doing, but just wanted to through that out there since you had mentioned the bactrim in the post.
Childhood cancer is so heartbreaking and your post was amazing about ways that everyone can help. Thank you! I feel your pain to see others fighting and seeing other situations even worse then ours can make us grateful and sick at the same time. God will see all our families through and has a plan in each situation. Hang in there!

Carey said...

I sent mine in last year! I hope they find a donor.

Don't worry too much about her numbers. They told us they could differ from hour to hour. We had times where they dropped drastically like that ... heck, they still do drop! Her white count was 5. something FINALLY, but then it dropped last month when we were there (not the direction we were hoping for). We go again to clinic tomorrow, hopefully it's back up towards "normal" ... whatever that is!

Michelle said...

My dear Heather...my heart aches for you now for so many reasons...for what the 4th floor is to you and all that it brings to you and all those families that you have grown to love, for the fact that you keep waiting, wondering, hoping, worrying...my heart aches my friend. True, blind faith Heather....sometimes walking in the dark not knowing why, how, or why not...walk there long enough only to find the brightest, most sweetest places on the earth. I hope and pray that in these moments of frustration and waiting you will find peace...you will feel the love of those who think of you constantly, worry, hope and pray with you and that you will feel the peace of our Father in Heaven and know He is watching over you and sweet Zoey and he has a plan. Strength my friend, and the love of those that adore you...always! I, too, am listing myself on that site!

The Eadle Family said...

I plan on becoming a donor after I lose my weight. :)

Praying that her numbers go up!

Mia hat eins mehr! said...

First of all, your new background is so lovely. I like it so much!

Also I am very sorry, you couldn`t start again. It´s always up and somehow down. Get prepared, physically and mentally, and then- again, like please stand in line and wait. It probably just feels like being endless.

Thank you very much for your constant support, it means the world to me. I am very scared to write about the last couple of days, but we are not there, not yet. We still have some time. I so wish I wouldn`t have to write about these days, but I will, to honour this little trooper.

Take care, my friend.

mrsrubly said...

i have already registered with the done marrow group, currenetly wishing that i could be a donor! i have not received any information/call to come forward. i am sorry that your heart is just breaking over Zoey's numbers. this is aweful! in God's timing her numbers will sky rocket and let the treatments begin!