We had a great day at home yesterday and today we are back for Reba’s 2nd MRI, 4th time under general anesthesia. We are hoping that the MRI will show that the tumor is shrinking, but we wont know until Thursday, May 28th. Her labs this morning showed low hemoglobin, so now Reba is getting a blood transfusion and then we go home! We are hoping for a nice, quiet weekend. Reba’s home-nurse, Lauren, comes Tuesday to draw blood. Happy Memorial Day weekend!
After a long week at Stanford, we’re on our way home! Reba’s ANC was 470 this morning, just below the 500 they were hoping for. But they feel comfortable letting us go home until Friday, when we will return for her MRI scan.
They also have scheduled her round 3 of chemo for May 28. This seems way too soon for us, but we’ve been told by multiple doctors/nurses that we don’t want to wait, we want to beat this tumor while it’s down.
No great news yet.
Reba’s ANC has dropped again so we have to stay here until they make a rising trend. This will be our 6th night here at LPCH.
Nik is super sick at home with either the flu or food poisening. It’s exactly what Kathy and I had a few weeks ago. Praying Reba is not exposed.
Reba got another magnesium infusion last night and got an albumin infusion this morning. She will get an IVIG infusion next.
Thank you for continued prayers.
Today I thought I would be able to skype with Zoe because it’s my birthday.
Well it was even better- I got to see her!!! I haven’t seen her for five days- it was the best birthday present to have my little family together for a short time. Rachel and Carlos came, Kathy and Poppa, and Stevie and Lauren. I can’t believe they all surprised me!! Best birthday ever! Hahaha
The older we get, the less important our birthdays become. They are a great excuse to have family and friends around, to enjoy a home cooked meal and to have things our way. I can tell you all, that more than anything in the world, all Leah wants for her birthday is to be at home, having the most usual, uninteresting, regular day. No party, no presents, no cake; just her two baby girls and her every day routine. Including myself, we tend to take for granted our most boring, yet potentially memorable moments.
Leah, you deserve a wonderful birthday, and I’m sorry that it must be at the hospital. You have never, even slightly, been a selfish person, and this is no exception. You are such a caring mother, wife, sister, daughter, and friend. I hope that your birthday is special and that we can all be at home together soon. You are so loved.
During the night Reba had an IVIG infusion to help raise her immunity and a magnesium infusion because she had fallen below 1.
Right now she is getting another albumin infusion because that too dropped to 1.3.
Still on antibiotics around the clock.
Still waiting for white blood cells to grow.
Thanks to everyone keeping up with the updates and thinking/praying for Reba.
Since our last post, Reba has had another blood transfusion, platelet infusion, albumin infusion, IV antibiotics around the clock and various other meds including magnesium and potassium.
They check her blood daily. At this point we will remain at Stanford until Reba is no longer neutropenic, when her absolute neutrophil count (ANC) increases. So hopefully the Neulasta injection she received after chemo last Thursday will kick in soon. It should encourage the white bloods cells to begin producing again.
We really don’t like to over medicate – we try to avoid medicine unless it is completely necessary. We are really putting our trust in these doctors, but we definitely worry about adding so many substances to the body. We have to believe that in Reba’s case, it is best for her.
Finally, at about 9:30pm, Reba was put in the ambulance that had full life support capability, so she was in good hands. Plus, Leah was able to ride along. Reba was connected to IV fluids the whole way up to Stanford.
When we got to the hospital, her room in the Bass Center was ready for her and it was a relief to be back at our familiar ‘second home’. There is no comparison to the nurses and doctors here. The nurses at Watsonville ER are great, but they don’t have daily interaction with children with cancer, and they’ve even thanked us for teaching them techniques that we’ve learned from Stanford.
So now they are doing additional blood cultures as well as drawing blood regularly for complete blood count (CBC) and metabolic panels. Her white blood count has gone up to 300, from yesterday morning’s 200. They have her on antibiotics and will keep her here until her count goes above 500. Her hemoglobin is down to 8.1, so they are giving her a blood transfusion at the moment. Also, her albumin is down to 1.3 so we think in the next few hours she will be getting an albumin infusion. Platelets are 50, not low enough for an infusion, but they’ll keep an eye on that level as well.
She is in a better mood this morning, and we are relieved to be here, but can’t wait to go back home. I’m sure Zoe and Reba miss each other. I wish I could explain to both of them what is going on.
We got home from Stanford around 3pm. Reba took a nap and when she woke up she felt a little warm, so we took her temperature. It was 100.9, and since she is severely neutropenic, we called the Stanford nurses and they told us to take Reba to our local ER in Watsonville, which is where we are now.
Reba is very exhausted. She had 2mL of blood taken from her arm and another 2mL taken from her port. The blood will be cultured to see what type of bacteria are present. She is getting IV antiobiotics at the moment and will be given Zofran for her nausea and then Tylenol for her fever. When that is finished she will be transported via paramedic back to Stanford for close monitoring. We will keep you updated.
It has been a pretty quiet week. Lauren, the home nurse, came on Monday (5/11) to draw blood. All the results came back good.
Today we were back at LPCH for our weekly clinic with Dr. Mavers. Reba’s blood revealed that she is neutropenic – she has zero white blood cells at the moment. It is so scary how chemo is helping and hurting so much at the same time. Her albumin level was at the threshold for an infusion, but since she is not symptomatic, the team decided against it.
We are looking forward to next Friday the 22nd, her next MRI. We want to see that tumor shrinking!
Much love and appreciation to all family and friends for holding Reba in your hearts.
Our children are our angels,
A true gift from up above.
From the moment that we see them,
Our world is flooded by love.
In life now all that matters,
Is their safety and their health.
Not everything that came before,
Like sleep, nights out or wealth.
Then suddenly from out the blue,
A bolt falls from the sky.
Your family life just falls apart,
And you can’t help wonder why?
An existence you knew nothing of,
Suddenly , becomes the norm.
You forget what life was like before,
You walked into this terrifying storm.
You sit beside your baby,
Feeling helpless as can be.
As nurses fight to help them,
And you pray a silent plea…
Why is this happening?
What can I do?
How do I take this pain
and suffering from You?
The truth is there’s nothing,
We as parents can do.
But support and gain strength,
From the childhood cancer crew.
For many their battles,
are far too relentless and long,
As they pray that they will one day,
Be free from cancer’s evil throng.
We are thankful for survivors,
Those children who’ve won the war.
But we remember those who fly high above,
through the skies they soar.
There’s many that still believe,
that “this won’t happen to me!”
But the day before my child was ill
I too had failed to see…
That childhood cancer happens.
It doesn’t care, who it strikes next.
But please be aware of its poison,
And it’s poisonous effects!
These children and their families,
Fight their battles hand in hand.
We will one day discover a cure,
And united we will stand!
By Katie
(Henry’s mom, brain tumor fighter)
