examples of faith and strength

This past week, three women have made an impact on my heart and have taught me some important lessons... and I want to make sure I have a record of it, so I'm including it in this blog.

Zoe made a friend at chemo our first week here in Utah - I'll call her Kaylee.  Kaylee is 11.  She had two brain tumors - one large, one smallish.  The large tumor was removed through surgery, but the small one couldn't be removed.  The chemo and radiation treatments caused the small tumor to split into about 20 smaller tumors.  Kaylee doesn't have much of a short term memory and she wasn't able to attend school much this past year because she was too sick.  She's very skinny and frail, but has the biggest smile, dazzling eyes, and a fabulous attitude.  She's darling... and she is always so happy to see Zoe.  Well, last week at chemo I talked with Kaylee's mom for a while.  Apparently Kaylee has started to have strokes - three in the past three weeks.  Her mom said that in the research she has done, once kids with this type of tumor start having this type of stroke, they die within three weeks.  Maybe Kaylee will prove to be different, but  I don't understand how a mother can know and accept such an outcome...  That takes incredible faith.  I asked what Kaylee understood of her prognosis and she said that one morning Kaylee woke up and said, "It would be so much easier if I just went to bed and didn't wake up."  This isn't a little girl giving up - she's a fighter - it's just a little girl who understands what is happening...  Kaylee's mom told her if that was what she felt she needed to do, it would all be ok... I can't even type right now because I can't see the screen through my tears... it absolutely breaks my heart.

Yesterday, I met a woman (I'll call her Deb) and her three-year-old angel daughter at chemo.  The sweet little angel (I'll call her Brooke) has Down's Syndrome and leukemia.  When I initially saw them, the first thing that popped into my mind was, "Double Whammy..."  Actually, after talking with Deb more, I learned it was more like a quadruple whammy...  Brooke has an identical twin who has recently started showing all the same signs of leukemia.  Apparently the fact that she is an identical twin and has Down's Syndrome make her more susceptible to this type of leukemia anyway.  The parents feel strongly this is what is happening, but they are waiting to have her tested until after a family vacation this next week.  This family vacation is the last wish of Brooke's grandmother who is dying of cancer.  And there is more... Brooke is #5 of 7 children.  One of Brooke's siblings is on the Autism Spectrum.  I can't imagine the demands on Deb's time and her heart.  As I spoke with Deb, I was truly in awe...  Prior to Brooke and her twin being born, Deb and her husband had no idea the babies had Down's Syndrome.  It was quite a shock, but they are so grateful for their angel babies and would not change a thing.  When Brooke started to become sick, Deb took her to the pediatrician several times during a month.  The pediatrician kept dismissing her concerns, but things became progressively worse.  Eventually a blood test was performed at a different facility which confirmed that Brooke had leukemia.  By this point, Brooke was extremely sick and the doctors said she would have died within two weeks if this wouldn't have been caught when it was.  It would have been very easy for Deb and her husband to be angry with the pediatrician, but they aren't... they have forgiven him... They rely upon each other and they rely upon God and He blesses them with grace and strength... 

As Zoe and I were leaving the hospital yesterday, we were so blessed to run into some family friends whom we don't see very often.  ("Jen," two of her children, and Jen's mother)  This family is incredible and they had a great impact on Sean's life growing up, and more recently have influenced my life as well.  We love and appreciate their entire family for many reasons...  They were at the hospital yesterday for some appointments for Jen's son, who has various "disabilities" (I really don't like that word...).  As I saw Jen pushing her son's wheelchair, I immediately thought about what is required of her to care for her son's physical needs.  I had the privilege of working at a summer camp for children/young adults with disabilities - I'm grateful for what I learned through that experience, but it was so physically exhausting... and Jen does that daily... mom's don't have a break.  Then I thought about what it is like for Jen to be at the hospital... Jen's beautiful daughter died a few years ago from leukemia.  Jen has spent too much time in a hospital and I wondered if she felt haunted by difficult memories whenever she had to be there.  I know that God does not test us with more than what we are able to endure - Jen has endured more than most can imagine... clearly, she is a strong and choice woman. 

**I found a quote by Elder Neal A. Maxwell about a month ago that has really stuck with me... "Rather than simply passing through trials, we must allow trials to pass through us in ways that sanctify us."  To sanctify means to make holy and to purify... These three women, because of their personal strength and their faith in God, have become purified through their trials.  How grateful I am for their examples...

recap of the week

Neupogen did the trick - for a minute...  Zoe's neutrophil count went from 500 to 9,000!!!  When I told Zoe that her "blood was good" (meaning she wasn't neutropenic anymore) the first thing she said was "YAY - can I have a strawberry then?!"  I loved this child-like response, but it made me sad because it really showed that she understands things... She gets it that when she's neutropenic a lot of her favorite foods aren't an option... and she goes with it.  Such a good kid. 

Zoe got a full chemo treatment on the 27th.  I've heard Neupogen called "the shot of life" and she definitely had plenty of spunk this past week and seemed to feel really good.

On Tuesday the home health nurse came for a blood draw - not great results... she was back down to 600.  Everyone expected that she would drop again, but not that quickly.  I felt frustrated...  I know this treatment process is a long road, but it gets tiresome when it seems like every route we take ends up with some sort of road block.  I'm grateful for opportunities I have to talk with other families going through treatment, because it gives me the attitude adjustment I need, so my pity-parties don't last too long. (I'll blog about that soon, hopefully...) 

We went to the doctor yesterday and her counts dropped a bit more to 500.  They decided to give her a partial dose of chemo anyway.  I'm expecting her counts to drop even more this week so we need to be careful.  Great timing because it's the Morgan County Fair :)  Zoe has been talking about the fair for months - truly.  And I've been excited to get her all dolled up in her red cowgirl boots and outfit from Khaki and Bim.  I think we'll still go, even if that means she has to wear a mask.  I really don't like making her wear a mask because of the attention it draws. 

neupogen shots

Zoe's doctors realized that her blood counts aren't going to make a dramatic improvement on their own.  So, last night we started neupogen shots which should stimulate her body to make more neutrophils.  Three shots a day for a bit... the poor kid was so good about it last night.  I'm running out of "shot spots" though - it's tough to find a spot in her little bruised arms or legs anymore, but we were finally able to start giving shots in her belly because it has a teensy bit of fat on it now.  I'm really hoping neupogen will do the trick...

Stuck on repeat

Same story as last week... Still waiting for blood counts to come up so she can get chemo.

The home health nurse came on Tuesday to do a blood draw - Z's counts are still too low to get chemo. It's so nice to have this home health system now so that atleast we don't waste our whole day sitting at the blasted hospital waiting to find out if she can get chemo or not. Zoe's cousins are so fascinated with all the shots, blood draws, etc. Nurse Nancy definitely had a captive audience on Tuesday - the cousins all wanted to be in on the action...

a family again

Our little family was all together this past week - it was wonderful!! Two months is too long... Zoe was beyond excited when she woke up last Saturday and saw her dad. We had a great time together and it was nice to have Sean here on Wednesday for Zoe's MRI. The next time Sean comes into town he'll have another little girl to hold and love...

physical therapy

Once upon a time, Zoe was comfortable climbing ladders all by herself. At the park in Jerusalem, there was a natural rock wall that was about 20 feet high and Zoe would climb it alone.  This all changed about six months ago, when she became blind in her right eye. She began to want someone to help her go up and down stairs, needed help at the playground to climb the ladder for the slide, etc...  We had talked about beginning physical therapy earlier in the year, but Zoe just didn't have the energy.  She has been feeling much better since being in Utah, so we started therapy about two weeks ago... I couldn't be happier with the way it's going.  The therapist is fabulous and works so well with Zoe.  The best part is she comes to the house for therapy.  Zoe made major improvements in just two weeks.  She will go up and down a ladder by herself and walk on the balance beam.  She still has trouble going down stairs, but we'll keep working on it.

 

 

desensitized

The other day Zoe was eating some candy, and I told her she could only have a couple pieces or she would get sick.  She thought for a minute and then said, "Well, if I get sick you can just take me to the hospital."  Another day in the hospital = no biggie for Zoe... in her little mind, she can eat candy until she pops and then just go to the hospital to get better.  She is completely desensitized...

special K and MRI

Zoe had another MRI on Wednesday... when Sean and I arrived in the recovery room, the nurse told us that they had to give Zoe some Ketamine.  My unspoken response was "ARE YOU KIDDING ME??  You gave her WHAT??"

You see, in my pre-mom life, I did some work as a substance abuse educator/counselor in various settings - prison, court system, hospital, and schools...  I learned about this funky little drug called "special K" - aka Ketamine.  Ketamine is often used in the club/rave world because it is a short-lasting dissociative anaesthetic that causes hallucinations.  In the veterinary world, Ketamine is a large animal tranquilizer.  My sweet little girl is neither a raver nor a large animal, so why in the world did they give her Ketamine????  Well, ketamine is also used as an anesthetic, so it was actually perfectly safe and appropriate for them to give it to her (her leg kept spasming during the MRI) but my initial reaction wasn't so accepting...

Anyhow, back to the MRI... the results showed neither growth nor shrinkage.  Stability is considered to be a positive outcome by the doctors.  I didn't expect any shrinkage since Zoe has had only two whole doses and two partial chemo doses in the past three months.  She was supposed to have chemo directly after MRI, but surprise, surprise her counts weren't high enough - even after a three week break from treatment... this definitely made me feel a bit disappointed and frustrated.  Zoe has had problems with her white cell count all along and it just seems to not make any major improvements, regardless of whether we keep her out of public, follow the neutropenic diet, yada yada.  So, we might try one more round of chemo and then rethink our options.

gimme a break

It has been so nice the past three weeks to have a break from chemo! Happy kid, warm weather (finally), it's been fabulous! Although Zoe has a break from chemo, she still has to have weekly blood draws... BUT her doctors arranged for a nurse to come to the home and take care of everything. Life is good...

no wonder...

I will no longer wonder why my kid seems to always be neutropenic... yesterday, my brother and I took Z and Loola (aka - Kambree) on a short walk and Zoe picked up some leaves from the middle of the road, started to eat them, and offered one to Loola.  Seriously!?  Apparently she thinks we can eat any leaf since we eat spinach, basil, and mint.  Not so much...

PARTY!!

When I told Zoe she gets a three week break from chemo, she went crazy and started running around the house yelling PARTY, PARTY!!  We are so excited!!  Zoe's neutrophil count was still at 500 (neutropenic) this past week, but I think her new doctors are realizing that she's not likely going to make major improvements... so if we're ever going to make progress with chemo, we're going to have to make some exceptions.  So... they gave her 75% of her dose.  She's had a really good week - no fever/reaction to the chemo, and no throwing up.  It's been great!

can you see?

Can you see??  I've heard this phrase several times this week as Zoe laughs her little head off and gives me eye tests.  She thinks it's so funny to give the tests to others, and I have to laugh as well...  She had "real" eye tests last Monday and there isn't anything new to report, which is good in one sense.  The pallor on the left optic nerve hasn't gotten any worse and her vision in that eye remains 20/25, thank heaven.  The right eye is about the same - she seems to sense light, but can't "see"...

no chemo

Z was still neutropenic yesterday, so she did not receive chemotherapy.  However, the good news is that the doctor thinks that the issues Zoe had last week may not have been related to a "hypersensitivity" to the carboplatin.  Because of other symptoms Zoe developed last week, her fever/other issues may have been simply a viral infection - I'm really hoping this is the case, but we probably won't know for sure until she gets another dose of carboplatin.

Zoe's chemo appointment last week went perfectly -- at first...  I was shocked that her neutrophil count was high enough to get treatment - that was a nice surprise.  Everything went quickly and it looked like we were going to get out of there by 1pm.  We were almost out the door and then Zoe started shivering uncontrollably and walking like a robot.  I felt her head and knew she had a fever... sure enough, 103 and rising.  So, needless to say we did not get out of there by 1pm. 

The doctor believes that Zoe has developed a "hypersensitivity" to the carboplatin - this is not good...  not quite sure what the treatment plan is going to be at this point.  We'll discuss at her next appointment on Wednesday.

(Back to her last appointment) -  When they realized Z had a fever, they had to reaccess her port and give antibiotics.  We were there for another couple hours...  It was a long day, leaving my parent's home at 7:30am and getting home at 5pm.  When we got home, Zoe seemed to feel fabulous.  She ran around and jumped on the trampoline with cousins for a couple hours.  By bedtime, her tylenol had started to wear off and she was ON FIRE!  Her fever was 105 - no exaggeration.  She has had several fevers of 104, but this was definitely her highest fever ever.  She still had a fever the following afternoon, so we had to go back to the hospital for more antibiotics.  They also performed more blood tests and noted that her neutrophil count dropped from 1300 to 500 in one day.  Since she had been having a fever and now her counts were low, they said she was on the verge of needing to be admitted to the hospital... BUT they said since I was a "conscientious mother" she could go home and I would just need to watch for certain symptoms. 

Zoe is really an amazing little girl.  I feel blessed every day that I get to be her mom...  At this last appointment, I was holding her after she developed the fever, and she looked up at me and sweetly said, "I need you momma..."  It melted my heart.  I need her too - she changes my soul...