Specialists...

September 26,  2011

September is going by so fast!  School started and we have seen almost every specialist that Josie has during this month.  Makes for very busy days and weeks.

Josie is doing well and seems to be turning some developmental milestones, of which we are so extremely excited to see.  She has started really sitting up on her own - for long periods of time.  Once she gets leaning to the left though, she can't catch herself due to the weakness in her left arm.  So even though she is sitting, we are still right next to her the whole time, she doesn't need any bumps and bruises from falling over.  As for her speech, she has started to say "mama"...not necessarily related to her actual mama. :)  She uses the "mama" sound for when she is happy and babbling as well as when she is hopping mad.  We've started to hear a few other sounds, but that is the main one right now, I must say, it is precious to hear!  As for other things she is doing, she is starting to love the simple baby games, such as peek-a-boo and leaning backwards because she wants to go upside down and she is learning that she can make fun sounds by pounding her hand and foot on things.  These are all great things to see her start doing and does our hearts good to see her learning and developing.

The reflux issue is back with a vengeance.  We had quite some time where the reflux was hardly happening - we weren't even carrying burp rags around with us anymore.  Then one week it started up again - nothing changed in her care, but it came back and has been non-stop.  Mornings are the worst and tend to be more painful and traumatic to Josie with lots of crying.  This last week has been a bit worse because she also got a cold and the drainage made her reflux more than usual, plus we were having to wipe her nose too.

Today Josie went in for an Upper-GI to see if something was triggering her reflux.  They do this under fluoroscopy and inject barium into her stomach through her g/j tube.  The procedure was going along fine, aside from Josie not caring for being strapped to a board and being turned almost upside down, but then they decided to add a little more barium to her stomach for better imaging.  It was like Josie was a volcano and barium came spewing out of her.  It was everywhere!  Needless to say, they got a good image of what happens when she refluxes!   Unfortunately, the PA that was doing the procedure said he didn't see anything out of the ordinary and that perhaps it is neurological.  Back to square one.

Last week we met with Josie's Neuro-surgeon that replaced her bone flap in her skull.  This was a follow-up visit to the surgery that was done in June, to see if her body was accepting the bone and healing.  As soon as he felt her head, he shook his head and said that the bone didn't take, her body was absorbing it.  We were definitely bummed, but thankfully God had already prepared us for this news.  Several weeks ago both Marc and I had started feeling soft spots on Josie's head and as the weeks continued the spots were getting softer.  We had a feeling that the bone hadn't taken and already had time to process this information - the doctor just confirmed it for us.  Aside from this news, the doctor was extremely pleased with Josie's development as well as he is in agreement with her oncologist that the chemo is working. 

What happens next?  Well, Josie now has the same soft spot, so we are just careful with her on that side and the doctor has ordered a helmet to be made for her.  Not so much for protection, but more as a shaping helmet.  Time will tell if it will mold her little noggin.

This week was her ophthalmologist appointment.  We have been worried about Josie's left eye for the last couple of months because it can tend to wander.  The girls have dubbed it "Josie's funky eye" thing.  Thankfully the eye doctor was very pleased with Josie's eyes and the progress she has made since the last time he saw her.  She does have some wondering in her left eye, but hopefully patching her eye for an hour or so each day should help strengthen her eyes.   She also has some peripheral damage, but at this point, he is just going to put it on the "watch and wait" list in her chart.  Her sight seems to be appropriate in all the other areas.  We are thankful for sure, now we just have to get her to leave her patch alone.

Over all, we are so glad to be home and getting into a routine of "normal" life.  We are praying that we will not have any unplanned hospital stays this year.  After this month, hopefully life will slow down - at least as far as appointments go.  

Josie is a true gift and we are blessed by her daily.  Thank you to all who are continuing to pray for us, we are still in need of it and know that God is hearing these prayers for us. 

Blessings,

Marc & Darcia

G-tube and Skull surgery

April 30, 2011

We received word that the members of the tumor board were in agreement that Josie's tumor is not growing and somewhat improved.  The neuro-surgeon was in favor of replacing Josie's skull bone, in fact, he would like to get it in sooner rather than later in order for it to start growing.  The cotton balls that are in her head from the last surgery are going to remain where they are for now.  The neuro-surgeon said that they are not causing a problem and could remain in there for years without any medical concerns.  He was more worried that if he removed them now there would be bleeding problems again and then we would be back to square one.  Unless there is a medical necessity to remove the cotton balls, they are going to stay until a later time.  Marc and I are in agreement with this decision and have no concerns with leaving them in her head. 

Based on this response, they would also like to go ahead with giving Josie a G-tube for feeding and nutritional support.  Although this is another surgery for her, we are in complete favor of having this done because it will mean that she will no longer have to have tape on her face and a tube going down her throat.  We have always thought that this was a major factor in her gagging and hope that it will help her in wanting to learn how to eat and drink. 

Josie will need to take a break from one of the chemo drugs (Avastan) that she is currently receiving, since it inhibits the healing process in her body and for obvious reasons, she needs to heal from both surgeries.  At this point, she had her last dose of this drug on April 22 and will not receive another dose until July 8.  She will continue to receive the other two drugs during this timeframe.

The two surgeries could not be done at the same time since the g-tube surgery is considered a "dirty" surgery and the skull replacement must be an absolutely sterile surgery. 

The G-tube surgery will be first surgery and will be scheduled sometime during the week of May 23 and most likely it will be an outpatient procedure.  She may possibly have to stay overnight for observation based on her history, but that is to be determined yet.  We meet with the g-tube surgeons this coming Friday, May 6 for a consultation and from there the date should be set for the surgery. 

The skull replacement surgery will take place sometime during the following week of May 30.  This will be a stay of 3-5 days, as far as we know.  I will be calling the neuro-surgeon's office this coming week to start those arrangements. 

Meanwhile, since Josie will need the other chemo drugs, those have now filled up the calendar and the month of May just got REALLY busy!   We are not complaining though - the MRI and Tumor Board response have been so encouraging and we feel like she is in great hands.  She is loved by so many people and that includes the medical staff.  Every time we go to clinic, there is always a little party surrounding Josie when we get there because the nurses, doctors and techs all have to come see "their Josie"! 

We are looking forward to this next step in her life and also seeing how God is going to continue to work through this precious kiddo.  Our constant prayer for her is that God will be seen clearly through her life - because it's not about her or us, it's always about Him.

Many blessings,

Marc & Darcia

MRI results

April 26, 2011

We are cautiously optimistic.  This is the only way that Marc and I can think of to explain the outcome of Josie's MRI.  Josie's Oncologist was modestly pleased with the new MRI and felt that the chemo was working.  Here are the bullet points of the preliminary results (more information to come Friday after the Tumor Board meets):

* The tumor has not grown, which means the new chemotherapy is doing what it is supposed to be doing.

* The tumor has not necessarily shrunk, but it appears to have changed and the area of the tumor looks "cleaner" than the last MRI in February.  This is a good thing.

The MRI still needs to be read by the Neuro-Surgeon and will go to the Tumor Board this coming Friday.  Things that need to be determined at the Tumor Board are the following:

* When to replace her skull bone and take the cotton balls out from her last surgery.

* When to do surgery for a G-tube in her stomach.

* If and when to do a stem cell harvest - which would be needed for the last rounds of chemotherapy at some point in time.

* What type of chemotherapy to use in the coming months - another round of inpatient was given as an option. 

We are encouraged with this first consultation, but also realize that we are still in the midst of this battle with cancer.  Josie still has a long road ahead of her.  The bright spot is that the doctor is extremely encouraged by how well Josie is developing.  She gave him some good smiles and showed him how she can really get rock'n!

After Friday, we will give another update as the pieces fall into place for Josie's treatment.  Thank you to all those that are praying for us - we have felt the peace of God in the midst of all that is happening this week.  When we think that we should be worried and anxious, we have been supplied with peace.  When we are tired and feel like we are at the bottom of our strength, there is always someone that steps in and helps us or gives us a word of encouragement to keep struggling well. 

May God be praised,

Marc & Darcia

Thankful hearts!

December 2, 2010

What we were thankful for this Thanksgiving…

*Marc & Darcia were thankful for being under the same roof (our roof!) at the same time!

*Reese was thankful for the new Wii game “Mario Kart” that someone allowed us to purchase.  Quite honestly, it is very fun for everyone to spend time together playing the Wii!

*Eliza was thankful for candy and all the fun play dates that she gets to go to each week!

*Josie was thankful for not being hooked up to so many wires and lines and that she could be carried all over the house, and not be on a 4 foot leash!

*The whole family was thankful for 9 ½ days at home and to celebrate Thanksgiving all together! 

Once again it has been a while since we posted an update, it was so nice to be home and somehow being home didn’t allow me to get on the computer quite as much as I do at the hospital.  

We have had many people ask, “what was it like being home with Josie?”.   We LOVED it – although it did come with its own challenges.  The last time Josie was home we administered her daily medications, but this time she came home with twice as many medications.  Marc posted a picture on Josie’s group page on facebook of all the bottles of “goodies” that we brought home.  At 9am and 9:30pm each day, she would get a “cocktail” of 8-9 medications.  We also had to give 6-7 at 3pm, one med at 5:00 and one at 8:30pm and then we each took a turn at night getting up – Marc got up for the 1 am med and I got up for the 3am med.  Thankfully the meds in the middle of the night didn’t wake Josie up – only us! 

On top of the medications, we also administered 2 chemotherapy drugs at 9pm.  The first night home I ended up calling the Hem/Onc nurse and had to ask some questions since I was a bit nervous and didn’t want to mess anything up.  Marc would draw up the other meds while I would do the chemo.  One of the drugs I had to open the capsules and dissolve the medication in water, which meant I had to wear special chemo gloves and wear a mask so that I didn’t inhale any of the powder from the capsule.  The other drug was just a syringe that we had to push into Josie’s feeding tube, but I still had to wear the special gloves to even handle the syringe.  Talk about nerve wracking – but so willing to do it in order for Josie to be home!

While at home for the week, we still had doctor appointments – so we were out and about to the Neurologist and then to the Hem/Onc Clinic for Josie to get labs drawn, a dressing change on her broviac and then to get a dose of yet another chemo drug that we could not give to her at home.  I believe that is how it is going to be anytime that we are home – run, run, run!  Actually, I wish I was really running – all this sitting at the hospital is doing nothing for me! J

We were given a bit of a present before we left the hospital – we can now hold Josie on her right side – which is the side without a bone-flap.  We are still very careful with her, but if we want to hold her on that side, it’s not a problem unless Josie shows us that it is a problem.  Talk about a bit of freedom!  Up until this point, we have been extremely, extremely careful to not even touch that side.  To now be able to pick her up and not worry as much has been such a gift.  The rest of the gift is that Josie does like to be on that side and will snuggle right in to our arms (especially her daddy’s).

Having everyone home was good and also made us realize how used to being on the go our other girls have become.  On Friday, the day after Thanksgiving, the older girls were like wild caged tigers – Marc and I both heaved a sigh of relief once they got into bed that night!  On Saturday, Marc took them on some errands in the morning and that little outing made all the difference for the rest of the day.  It was so nice though to be home with the girls and to be able to let Josie’s big sisters hold her once again.  They are so in love with her!!

This past Monday we went back to the Hem/Onc clinic for blood to be drawn and then they admitted her back to the hospital for the final chemo drug of this cycle called Cytoxin (sounds simply dreadful, doesn’t it?!).  Cytoxin is the most powerful drug in this cycle and they wanted Josie admitted because it can cause her blood counts to drop.  They are right – her blood counts dropped today and she is currently as I write this, getting a blood transfusion because her hemoglobin dipped to far down.  Her other blood counts have all dropped today too, not dangerously low, but they still dropped.  Thankfully they are not surprised by and of this and they just give her what she needs; a boost of blood or platelets or a shot to increase her white blood cell production.  The medical world amazes me.  

Here’s my little plug and then I will get off my soap box – if you want to help – not just Josie, but lots of people, giving blood is huge!  Josie has had several blood transfusions –during both surgeries and also since she has been on chemo – it has been literally life saving for her.  Okay…I’m stepping down. 

Once Josie’s blood counts stop dropping and start to recover, an MRI will be scheduled and that imaging will help the doctors determine the next regiment for Josie’s treatment.  We hope to be able to come home once her blood counts recover and that is what the doctors are hopeful for as well.  To be home for Christmas would be absolutely wonderful and we are praying to that end!  

We have been so blessed throughout this journey – even though it is a heart wrenching journey.  God has touched our lives through so many people; words cannot even begin to explain our overflowing hearts.  We know that God is working and we see it every day in the beautiful life of our baby girl.  We continue to be on our knees and know that God is using this journey for His glory, not ours and that is the ultimate reason for anything.

Continued blessings,

Marc & Darcia

First round of Chemotherapy

November 9, 2010

Josie is handling chemotherapy pretty well so far.  She has started throwing up as of this last Friday morning.  Aunt Tara (my brother Josh’s wife) was staying overnight with Josie to give us a much needed break and ended up witnessing the first bout of yuck.  Josie has now thrown up multiple times, but the doctor does not think it is chemo related since it has been several days since her last dose and typically the nausea starts the day of or the day after treatment.  My belief is that she has started refluxing again – like she did while she was home with us.  They are keeping a close eye on her and are trying a couple different things to see if it helps her.  The main concern is they do not want her to get anything in her lungs and cause her to get sick.  Keep praying that she stays healthy as well as Marc and me.  If one of us gets sick, it means we cannot be up here with her and that would be downright rotten. L

Many people have asked about Josie’s treatment and what that looks like for a baby. The treatment that she is being given is part of a new treatment plan based out of a hospital in Los Angeles.  She receives 3 different chemotherapy drugs throughout the cycle.  One drug is a onetime dose the first day of the cycle, one drug is given once a week for 3 weeks of the cycle and the third drug is given for the first 5 days of the cycle.  Don’t quote me on all of this information, as we are still trying to wrap our minds around the whole process ourselves.  At day 7-10 of the cycle, Josie will probably be at her lowest point because her white blood cells will be low and it is harder to fight off infections.  Tomorrow starts day 7 of the cycle – they draw her blood levels every other day and will watch her closely.   After each cycle, she will probably have some type of scan done to see how the tumor is responding to treatment.  If after a couple of cycles they find that the tumor is not responding, they have another option of a 4 drug chemotherapy treatment.  It’s not necessarily a stronger treatment, just targeting the tumor differently.  At this point though, we just wait and pray.

Yesterday she had a surgical procedure done to place a broviac line in her chest.  This is a more permanent and safer port that she can have in for an extended period of time for chemotherapy.  Everything went fine with the procedure – it took a little longer since she is an infant and her veins are very tiny.  When the time comes for her to go home, the line will remain in and we will be able to use it to administer medication at home.

I had a glimpse of hope today as Josie looked at me and actually smiled and shortly after that gave me another smile along with some itty bitty coo's.  My heart melted, I must say!  It feels like things are clicking back into place for her - like she is coming out of the fog of all the surgery and drugs in her system.  When we thought we might lose her the night of her surgery, one of the only things that kept going through my mind, was her precious smile, the thought of not seeing that smile again tore me up.  I asked God that night, that if He spared Josie’s life that I might see her smile again.  Thank you God for answered prayer and proof that He cares about even the smallest things like a smile!

A friend of mine wrote me today and said, “I don’t know how to make sense of Josie’s suffering.”  I pondered her words for a while throughout the evening, my conclusion: I can't make sense of Josie's suffering either.  It makes it all the harder when I can't just pick up my baby and comfort her because I have to be so careful not to pull any wires and cords; and I can only hold her a certain way because she is missing part of her skull; and that sometimes picking her up to hold her makes her more uncomfortable than she was just lying in her bed.  Some days it stretches me extremely thin, yet each day, I realize that God has put Josie in our life and her life is for a reason, no matter how long or short her days may be on this earth.  God has a much bigger picture than I can ever understand, in fact he has the whole picture and every brush stroke of that picture is perfectly painted – including Josie.  With that truth, I am secure – it doesn’t mean we won’t have a lot of tears and heartache for our baby girl to have a “normal” life or even life in general.  The strokes seem harsh right now, but they are forever making the final picture glorious.  For right now though, I am looking at the beautiful brush stroke of a miraculous baby smile. 

Blessings (and hopefully a restful night here with Lil’ Jo),

Marc & Darcia