Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Sunday, February 25, 2007

Round One

I am sorry we haven't posted anything. The wireless connectivity here at the hospital has been a little haywire.

Madelyn went to recovery at around 12:45PM on Friday. She had some oxygen saturation issues in the OR and recovery and had to have her upper airway frequently suctioned and received a repeat breathing treatment in recovery.

The central line was placed in her facial vein/internal jugular. They tried to go for her external jugular which would be a little off her center line of her body, but it was too small. She has two small incisions on her neck and one on her chest. The port-a-cath was placed under her skin between her right nipple and clavicle.

We came up to the room on Friday at around 2PM. Madelyn continued to recover well. She was a little groggy and was really congested. In surgery they gave her a good amount of fluids and this would make her sound more wet.

She began her first chemo treatment at 7PM on Friday. This consisted of the first drug, Carboplatin, going in over the course of an hour and then a dose of VP-16 (etoposide) @ 8PM given over two hours. They then push more fluid. When the first drop of carboplatin went in, I had trouble holding back the tears. You want to protect your children and keep them from harm. You baby-proof your home so they don't drink the Drano. Then for some reason we cannot understand, you're forced into a situation where you have no choice but to shoot them up with stuff that can eat through plastic, which is why special tubing and glass bottles of medicine are what they use. We have to change her diapers with gloves on so we don't absorb the small amounts in her urine. Crazy...

Friday night was pretty uneventful other than our crossing the threshold of innocence. We have poisoned our child, but its all we can do for her now.

Normally, they would give her the daily treatments 24 hours after the last one began, but to get us out of here at a reasonable tim eon Sunday we have changed the interval to 20 hours. Saturday @ 4PM they began just VP-16 alone using the same delivery as Friday. This went fine. Infants seem to tolerate this first round very well, and to be honest, Madelyn is handling it better than I am.

So, its Sunday morning and the last VP-16 for the weekend is scheduled for noon. It will take two hours to run in and then they will push some fluids and send us home.

We have a book from the patient educator with all of our instructions. I will have to review it to be sure, but we're going to be in the clinic a lot for blood tests and checkups.

The drugs, in a very general sense, work to stop actively dividing cells from dividing. The other effects are that her immune system will be suppressed due to the inhibition of good cells like red blood cells (RBC), white blood cells (WBC), and platelets will be impacted as well. The effect of each is:

Low RBCs (Anemia)
RBCs carry hemoglobin, which carries oxygen through the blood. When this is reduced, Madelyn will be a little tired and fatigued. She may show signs of paleness in her skin and especially her mucous membranes (inside her lips and eyelids).

Low WBCs (Neutropenia)
WBCs fight infection, so she will be more prone to bacterial infections. For this, we are giving her antibiotics.

Low Platelet Count (Thrombocytopenia)
Platelets are the clotting components of the blood. With a low platelet count, Madelyn can have issues with bleeding. If she is cuts, gets nosebleeds, etc. we may have issues stopping it. She may get more bruises. We have to be very careful of her bumping her head.

We just spoke with the team and we are going home this afternoon. We have our instructions and will be back in the clinic on Thursday. We have an MIBG scan scheduled for March 6th as well as a hearing test (one of the meds can affect hearing). We had an echocardiogram and her cardiac function is good. She still has a small opening from her right to left atrium but this should close as she continues to develop.

We need to make some calls as her prescriptions are not all that common for pharmacies. We'll update you as things develop. Thanks for your continued prayers. I also wanted to thank our pastor Larry Maio for coming by on Friday. His coming by was a great relief. Also, Judy Lennon came by and is taking the lead in helping us establish a fund for Madelyn's medical and non-medical needs. Judy also brought by Madelyn's new favortie toy, Froggy.

Well, we need to get ready to go home and for her last chemo treatment for this round. The next round will be March 15th and will be all day in the clinic, but no overnight stay in the hospital.

Thanks again for everything!


Anonymous said...

Our thoughts and prayers are with you everyday.
John and Christy Corder

Anonymous said...

THinking of you all and wishing there was something we could do to help...so please CALL ME if you need ANYTHING!

Unknown said...

Hi I came across your cute little daughter's page thru the Ugarte's site. I have a grandson named Tanner Gilbert, he lives in Oklahoma and was diagnosed with Neuroblastoma at the age of 8 months, N-MYC AMPLIFIED less than 20% of making it to his first birthday. He went thru neumerous chemo treatments, radiation, removal of his tumor which was above his left adrenal gland, 2 Stem cell transplants, 6 months of Accutane and was NED from 11 months old and officially off treatment in Nov 2005. Unfortunately after 2 years of NED status he was diagnosed with AML, as the doctor told us treatment related AML,(one of the chemo drugs caused this)there was only a less than 1% CHANCE that he would get another cancer and Tanner being Tanner was in that 1%. He received chemo again right before his 3rd b'day that he spent in the hospital (in Oklahoma City)and then again just before Christmas. He received a Bone Marrow Transplant on Jan 24th (from an anonymous donor)and was released from the hospital 1 week early(Feb.9th).He is doing really well and his body is showing 95% donor cells. I always tell my daughter that Tanner is a fighter and our little miracle. So don't give up, yes Madelyn will go thru some hard times as will you all, but there are MIRACLES to be had and God willing she will be your little MIRACLE. Please feel free to check out my grandson's site. It is www.caringbridge.org/ny/tannergilbert Jutta Forkel

NB Warrior said...

Hi guys, wow a lot has changed since the last time I stopped by. Things were pretty hectic around our house for a while. Nothing serious, just a bunch of colds making their way around. =)

I was sad to read that more things showed up, but glad to see that you guys are going through some sort of treatment. I know chemo can be scary, but at least you know as a parent you are doing everything you can to help your daughter beat this horrible disease.

One thing that we were very grateful when Isabella went through chemo was the fact that she NEVER got sick to the point of throwing up. She was too young at the time to tell us if she felt nauseas, so I think the way she told us was by not eating as much.

I am hoping that miss Madelyn doesn't have a hard time with the chemo. Please know that our family is always thinking of you guys and praying for your little one!! =)

Anonymous said...

Many prayers your way. I think daily about her. I am a friend of Tina. I sent Maddy the bear when she was 1st in hospital. Im not sure if she told you butI have donated and will every month to St Judes in Madelyns name. I love all her pictures what a doll she is, and wow her laughing video had me in tears laughing back! lots of hugs her way.

Anonymous said...

Hi guys, we just wanted to let you know we are still praying and expecting a great miracle for your little doll. Please feel free to contact us at any time.
Many blessings,
Carolyn Phillips(Eternal Truths Ministries)(Larry's mom)