Limbo

I really love this picture of her and her favorite musician Terry, during her last stay in the hospital.

No news isn't always good news. Sometimes it means I just don't know what to say or how to say it. We got the results from the CT scan Clara had on Monday and in a word it was frustrating, yet a reality we knew we might face given the extent of the disease. The abdominal tumor hasn't changed since the initial scan she had when first diagnosed. The head tumor decreased 3mm, possibly a result of the radiation treatments she received. Given this disappointment we recognize the miracle that despite no shrinkage she is feeling so much better than she did 3 months ago. We haven't lost hope. Maybe this last round of chemo she had will do the trick. We are in limbo till Friday when we will talk to the doctors to get an idea on where we go from here. Chances are she won't have surgery on Tuesday as we had tentatively planned on. We are learning to thrive (somewhat) on living in limbo.

In the meantime she is out of the hospital and doing pretty well. Every night I hook her up to an IV so she can get fluids since she isn't eating/drinking enough to sustain her. The anti-nausea med she is on is so much better so at least her nausea is under control. I'm definitely counting the new med and home IV's as blessings! 

“Trust in the Lord with all thine heart; and lean not unto thine own understanding.

“In all thy ways acknowledge him, and he shall direct thy paths” (Prov. 3:5–6).

In other news, our 3 boys started school yesterday. My heart ached not being able to be there, but Brian did a good job covering the mom duties. Definite "Father of the Year"...now if only he could coach them in taking less awkward pictures :)

After school pictures, maybe that's why they weren't as cooperative...we'll go with that.

3 months

May 23rd Clara was diagnosed with neuroblastoma and this new life of waking up each morning realizing that in fact it hasn't been a dream, my 2 year old has cancer, began. And now, three months later Clara is starting her fifth round of chemo. The last three months have been the hardest, most blessed days of my life. An experience I wouldn't wish on anyone, but then again, wish everyone could have an experience like this that brings blessings right along with the struggles. Clara still has a long road ahead of her. We've had a little taste thus far of what lies ahead. The sweet and the bitter, the ups and the downs. I'm slowly learning and trying to surrender my will to the will of the Lord, putting my trust in him and letting him carry my burdens. It's all I can do and all I need to do.

Tonight, Clara finally got her first dose of one of the two chemo drugs she is getting this round. She also had a renal ultrasound tonight to check her kidneys/bladder I'm hoping everything checks out normal! We are expecting her to be pretty nauseous this round as she was with round 3, but grateful she won't have to deal with the mucusitis (that's with the next round). So far she is peacefully sleeping. I'm sure when she wakes up in the morning she will want to continue the Anne of Green Gables marathon we had today, a welcome break from Mickey Mouse! She has c-diff again, so we are back in isolation...

Home

I could have kissed Clara's doctor today when he said she wasn't ready to start chemo today and we could go home. She will start round 5 chemo on Monday. Clara needs this. It is a sweet reprieve and hopefully we can avoid any problems. We are guessing that this won't happen again until after her transplant. It is hard to believe it has only been 12 1/2 weeks since this all started. It feels like 12 1/2 years. Oh, it is good to be home! Heavenly Father answered my prayers, we are so blessed.

Still here

We had hoped Clara would be released today, but the pain has persisted as well as her refusal to eat and drink anything. She is dependent upon the IV fluids and nutrition and continuous pain med she has been on for the last 10 days. The trial of weaning her off of everything today proved to be premature. So tomorrow we will try again. Round 5 of chemo begins on Wednesday and we are hoping that she can get a hospital break for a few days before she has to come back. Oh, how we all need a break!

Clara is noticeably weary of everything right now. Does she even remember what life was like before neuroblastoma, chemo and hospital stays invaded her toddler world? Everyday I long for that old life to come back to her. Soon enough we will return to that old life--- in our house, on our street, together again without another hospital visit looming over our heads. That is why I look forward to each new day. Clara is that much closer to home.

Isolation

Blanket pulled up over her head. I don't blame her.

It was only a matter of time before we got the dreaded isolation sentence like so many others on the floor have gotten. Today it was Clara's turn to be quarantined in her room. C-Diff has made its' way to Clara's digestive tract and it really comes as no surprise. Most oncology kids get it. It explains the continual fevers and a slew of other symptoms. All of this on top of the mucositis. The blessing for the day is she felt well enough for 10 minutes this morning to take a quick spin around the floor in the wheel chair, and she felt well enough to eat two cheerios and take four or five licks of a popsicle. The rest of the day has been more fevers, nausea, sleeping and overall misery. As soon as her white blood cells start growing she will start healing. The cycle will continue. Bad days and good days. Those good days are cherished and not taken for granted. We HOPE that soon she will be back to cruising the halls or at least feeling like she should.

Just know that your prayers are helping her sleep and rest. They are also giving her brothers and sister as well as her parents comfort and stamina. I read something today that rejuvenated my will to continue pressing forward in faith:

We should never let hope be displaced by despair. The Apostle Paul wrote that we “should plow in hope” (1 Corinthians 9:10). The exercise of hope enriches our lives and helps us look forward to the future. -Steven E. Snow

There is so much heartache, disappointment, sorrow and pain in this mortal life. If we keep hope in our hearts and minds each day, it makes all the trials and challenges that much easier to bear We hope tomorrow will be better for Clara!