We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Tuesday, February 27, 2007

New York City, here we come!

Thank you all for your sweet comments about the pictures. We have had a very busy couple of days. Ellie's blood counts are going down, so tomorrow she should be getting blood transfusions. The hearing test on Monday was very thorough. Ellie's right ear is better than her left. There is speculation that the tumor in her head may have diminished the hearing in Ellie's left ear even before chemo... the same way that it affected her left eye - but less severe (as she has no vision in the left eye). Her right ear is able to pick up most of the tones used in speech, but her hearing in the higher ranges - such as those used when saying the letters t, f, s, and th - have diminished. Her left ear tested worse than that - she had some difficulty hearing tones in the normal ranges. It was somewhat sobering to hear this in so many words, but we have not noticed much of a difference in Ellie's everyday life thus far. Unfortunately, she will be receiving the drug that affects her hearing next round again. I didn't realize that until now. (I had mistakenly attributed the wrong drug to the hearing loss.) For now she is able to carry on without the use of hearing aides, but they may become necessary in the future.

The big news in our lives right now is that we will be heading up to New York on Thursday to consult with a doctor at Memorial Sloan Kettering. We were planning to go there at the end of Ellie's chemo in order to begin treatment with the Monoclonal Antibody, but we have decided to go now. We researched this hospital months ago and planned to transfer to New York, but all of the doors seemed to close at that time. We then decided to wait until the end of chemo, but now the doors have all opened and it appears that this is God's perfect timing for the move. We have been very impressed with everything that we hear regarding Sloan Kettering. Neuroblastoma is a very tricky cancer to treat, and it is also relatively rare - many hospitals see only several cases per year. (I believe that Ellie is one of about five NB children at our hospital.) Sloan Kettering specializes in NB, and they treat hundreds of children (and even a few adults) with this type of cancer every year.

I know this sounds like it's all happening so fast... because it is! We just started seriously checking into the move on Friday, and now we will be leaving on Thursday... with an appointment to see the doctor on Friday. I think that I have whiplash! We have spent hours on the phone and have been running around like headless chickens, scrambling to make all of the arrangements. John, Ellie and I were able to get a flight with Corporate Angel Network - a wonderful organization that arranges FREE flights for cancer patients and their parents (also adult patients and one companion) with generous companies who donate empty seats on their corporate jets. It is such a blessing to know that we will not only be able to fly free of charge, but also in a MUCH safer environment for Ellie (no germ-ridden commercial jumbo-jets). This is not a one time offer, but can be used as often as we need to travel to and from NY for treatments. This particular flight will take us to New Jersey, and John's aunt Melanie will pick us up and take us to the Ronald McDonald house. Melanie has been shopping for all of the supplies (groceries, etc.) that we will need to set up there. She will also be there with us on Friday to help with Ellie so that we can freely talk with the doctor.

We do not know what the next few weeks or months will hold for Ellie. At this point, the plan is to meet the doctor and have Ellie undergo a number of tests: MRI, CT scans and such. Once those are completed, the doctor will tell us his recommendations for treatment. John be able to stay in NY for 2 weeks, at the very most. We don't know if Ellie and I will be able to come home for a visit before heading back, or if we will need to stay indefinitely. If we stay, John will make short visits from time to time, and my mom and others will take turns coming up to help me take care of Ellie. (We will also bring Ethan up for some visits.) If there are times when we are unable to fly home but can take a break from the hospital and surrounding area, we will be able to stay with Melanie and Richard in Conneticut. Well... that is the plan as we know it now. I will be sure to let you know what is happening as things unfold.

John and I were talking tonight about how we feel right now. Our hearts have been so full these past months with the serious flood of emotions surrounding Ellie's cancer and treatment... not only sadness, but so much tenderness and even unexpected joy. Now it feels like we've unzipped the giant suitcase and stuffed in a whole bunch of new emotions (ok, give me a break here... I'm in packing mode...) We have been energized with a kind of anticipation and excitement that seems almost surprising in light of the serious circumstances. We just can't help ourselves... it's like we're embarking on an adventure! We figure that since we need to do this, we might as well enjoy it as much as possible along the way. On top of all that, we have that deep down peace that flows through the farthest reaches of our hearts that tells us this is right... that this is God's clear leading for our precious daughter. A couple of years ago, during a particularly trying time, God gave me some beautiful verses in Isaiah. They have been every bit as meaningful to me in these past six months as they were when I first read them. Isaiah 30:15 says "In repentance and rest you shall be saved, in quietness and trust is your strength." Verse 18: "Therefore the Lord longs to be gracious to you, and therefore He waits on high to have compassion on you." Verses 20-21: "He, your Teacher will no longer hide Himself, but your eyes will behold your Teacher. And your ears will hear a word behind you, 'This is the way, walk in it,' whenever you turn to the right or the left." His leading has been as clear to us as if He had whispered directly in our ears at the fork in the road. And so... when you envision the freezing masses on the streets of New York City... I will be the bright teal spot in a sea of black coats (yes, I had to rebell against the black trench coats) and we will be the little family that you might pass without a second glance, except for the unforgettable little girl with no hair peeking out from under her fuzzy pink hat, with shining blue eyes full of hope and anticipation!

Sunday, February 25, 2007


I just realized how long it has been since I last updated... so sorry! Ellie has been doing great. She did not lose as much weight as we thought she would, so we are thrilled about that. Tomorrow Ellie will have a hearing test - this was the round that's hard on her hearing. She has mentioned some ringing in the ears, but not as much as she did on round 3. Thank you to those who have been specifically praying about that! We also get her counts checked tomorrow. Numbers should be going down now. I will send out an update tomorrow with any new information. Thanks for your patience with me!

Skees Family Photos

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Photos by: Cece Glover

Thursday, February 22, 2007


We made it home last night. Ellie was able to keep small bits of food down all day, so we were released. It was very nice to get home. My mom had cleaned up the mess we made leaving home in such a hurry, and even went the extra mile. There's nothing like coming home to clean dishes...clean laundry...clean bathroom...you name it, it was clean! Left to my own devices, this would never happen. We were able to just settle in and relax. We made a quick trip over to see Ethan, but left him at Stan and Pat's for another night. We weren't sure how the night would go with Ellie. We have found that with this round, if we keep the anti-nausea medication going every 8 hours for a couple of days, she can make it over the worst of it. So we set an alarm for 2:00, then were able to sleep in until the 10:00 dose. (Another good reason for leavning Ethan where he was for another night!) Ellie has already eaten a whole egg for breakfast. Today's goal is to keep food and drink going in very small, frequent doses as well as keeping the medication on a good schedule. And getting lots of rest...for both Ellie and Mommy. :-)

Thank you all for the sweet comments and your constant prayers and encouragement. We are thankful that we have another round behind us. Please pray that Ellie's recovery would be quick so that she can gain back weight before surgery. Thanks so much!

Wednesday, February 21, 2007

Chemo round 5 is complete!

It is lunchtime and we are still in the hospital as I write this. Ellie finished chemo over 24 hours ago. We were set to go home this morning once all of her post-hydration was finished, but last night Ellie started throwing up. She had thrown up once the night before...on day three, which happened last time she had these drugs, but last night she threw up three times in a row. This morning as soon as Ellie got out of bed, she threw up again...and again a half hour later. So...here we sit. She's finally eating something and if she shows signs of keeping the nausea under control enough to keep some food and liquids down, then we will be on our way home. Despite all of that ickiness, I would have to say that I'm still pleased with how strong Ellie has been this round. I know that sounds like a contradiction, but overall her coloring has been better than usual and her spirits have been mostly up. The last two days she took long naps, and after waking up from one, she had a sleepy little smile on her face. John asked why she was smiling and she said "lots of things".

OK, here's the highlights of chemo round 5:


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Snuggling to sleep last night:

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We were able to go to an animal show here in the hospital this morning:

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Petting a bunny:

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Special guest, Niko (from Pocahontus) and Ellie:

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Monday, February 19, 2007

Here's To Dad's

This is my second update today...a rarety to be sure! :-)

This time I just wanted to comment on something I observed in the halls today. I was going to heat up my cold coffee in the kitchen, and by the time I got back to the room I was so struck by what I had witnessed in the halls... Everywhere I looked there were DAD'S. There was the man in sweatpants and footie socks pacing back and forth with a baby in a pink blanket. Then there was the man sprawled on the floor with his son in front of the video bookshelf. Coming back towards the room I peeked into a room and saw a man lying in the hospital bed with his little boy. And our neighbor, Carson's dad just arrived for his night shift and was watching over his nauseous little guy. Earlier I saw Talia's dad walking with his newborn daughter in the front carrier, toddler son in tow. I know that the steriotype is that of the caring mama soothing her little one in the hospital, but today just seemed to be all about the dads. It just made me smile, and once again I thought of Ellie's sweet daddy who's coming to be with us tonight and how nothing lights up her world like seeing him! So... to dads everywhere... thank you for being there.

And even as I write this, I know that there are some children (and adults) out there who don't know this kind of love from a father... or have lost their fathers. To you, I want you to give you the words of one of the songs from Twila Paris' beautiful lullaby CD "Bedtime Prayers":

The One who hears the children has known you from the start
He placed you in a family so that you can feel His heart
A mother and a father to keep you safe and warm
But he was with you long before the day that you were born

And if you don't have a daddy
He will be your father too
And He will always keep you in His sight

When it gets too dark to stay ahead
And you can't find your way, it will be alright
He will be your guiding light

He loves you more than I can say
And He is always taking care of you
He loves you more than I can say
And more than I can say, He hopes
That you will love Him too

May God bless you all tonight with His Father Love!

Into Day Three...

Thank you all for praying! Ellie had another pretty good day yesterday. Again, towards evening she was hurting some. I think that's when the morning drugs start to wear off and the whole day catches up with her. It's a daily struggle to get Ellie to bed at a decent time (even at home) because of all of the things, medicine, etc... to get in her (plus once late nights happen a few times at the hospital or wherever, it's SO hard to turn that around again). So I've been trying to get her down earlier at home (successfully) and continued to try once we got back in the hospital, but it's just not been possibile on this visit. Last night it was late and she was tired and hurting... Pain control is such a tricky issue...at least for me. I tend to put a lot of thought into it before just giving her something right up front. I'm sure this must sound harsh, but it's really not. You see, in times like these I think that knowing your child really well is part of the equation. When pain and discomfort are manageable for her without drugs, Ellie can be easily distracted from the pain or sleep through it. When she's tired, she feels like it's unbearable...until she falls asleep. The last thing in the world that I want to do with Ellie is allow her to suffer, but I also do not wish to give her a drug for every discomfort. When Ellie was an infant I learned the skill of stepping back and thinking for a few minutes, even while she was screaming her head off and every instinct within me wanted to jump and just make the crying stop. I wish that I could say that I always did it right, but it was a learning experience that has continued to this day...and one that has paid huge dividends now. So far on this hospital trip Ellie has only needed the anti-nausea meds that are given just before the chemo each morning. At night Ellie has been able to put a heating pad on her tummy and fall asleep in five minutes...and then sleep WELL all night long. I love hearing her breathe and sleep so peacefully, knowing that it's under her own power and not drug-induced. And then wake up clear headed and strong. Don't get me wrong - there have been times that I was the first one at the nurse's station requesting a drug to bring Ellie relief... and when she needs the drugs, they really work! So when you pray for me, the biggest need that I have in the hospital is for wisdom...and calmness to step back and think and pray a little before deciding what to do...and then boldness to stand on that decision and words to explain it (often there's a nurse standing there ready to go get a drug if I would just nod in her direction). By nature I am not a bold person, and I have a hard time making the words come out properly in spontaneous situations. I do feel like God has undertaken for me many times in this area since September.

Yesterday I spent some time with a new family in the hospital. Their 7 year old daughter has been just diagnosed with Neuroblastoma, Stage IV. Watching them process all of the new information and try to get their feet under them just broke my heart. I remember so clearly how overwhelmed I felt when we moved to the oncology floor and I realized that this was kind of our new "home". I hope that I was able to give them enough tips to get them started and feel comfortable, but really, so much of this has to be figured out as you go...what's right and works for one child is not always the same for the next one. Including the new girl, there are four NB children in and out of this hospital these days. The other NB kids are: Carson (age 6 - diagnosed at the same time as Ellie, and currently on round 6); Irenie (a 4 year old girl, I believe on round 4) and Talia (age 7 - just starting round 1). If you would please pray for these little ones and their families also, I would so appreciate it. It has been good to be able to share information, and look out and see others just like us in the halls, but all of their symptoms and responses to things are SO different. This is the strangest disease...nothing is standard.

Thanks so much for your constant love and prayers for us. We feel so safe and peaceful, even in this hospital room, knowing that God Himself is surrounding us with His protection and love!

Saturday, February 17, 2007

Round Five Begins!

First thing this morning, Ellie was given started on her chemo. They always pre-medicate with anti-nausea drugs, so it has taken all day for Ellie to feel the effects of the chemo drugs. Her stomach started hurting this afternoon and now she's mostly just tired and not feeling so well. Tomorrow morning she will have the second round of drugs.

When we got word yesterday that we could come in to the hospital, we threw caution to the wind and took Ellie out for some last minute fun. We have been so careful about germs that Ellie has had to remain home or at grandparents houses almost exclusively. She had been eating so well and was feeling strong, so first we took her to a movie. We made sure that she wore a mask until we took our seats in the theater...we went at a time when there were few children around and sat as far away from people as possible. Later we went to a store (fully masked, of course) and she did a little shopping... We went home and packed up our stuff as quickly as possible (leaving the house looking like a hurricane had just blown through) and then left for a fancy dinner out before arriving at the hospital. We had just discovered this wonderful restaurant where they use organic produce and free-range meats. It was the perfect treat for Ellie, and still something that fits within the healthy standards that we have set for her diet. We had such a blast. Ellie savored each and every moment.

Ellie walking through the mall...all cute in her little outfit!

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Ellie and Mommy enjoying our evening. (She was so happy that she could not stop hugging me!)

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I know this picture is blurry...low light and all...but she had just tasted the amazing dessert and I thought that she would come undone with the wonder of it all. Her eyes rolled back in her head and she almost melted into the booth.

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Thanks so much for praying...we will let you know how things go day by day...

Friday, February 16, 2007


Thank you all for praying these last several days! We have been living in a wierd sort of time warp where everything almost felt "normal" again since nothing was happening with Ellie's treatment. This has been her longest time without chemo or other sickness, so it has been nice to see her feeling well and happy. It has just been strange to feel so close to normal...but not.

We have been gathering information, talking with Ellie's oncologist, and just waiting. I have not meant to leave you all in the dark regarding the information, but it has been complicated. I still don't have difinitive answers about much, but I will give you the scenarios that we are facing in the upcoming days and months.

The delay in Ellie starting the fifth round of chemo was due to a couple of factors. First, Ellie's oncologist was doing some research and conferring with the doctor we met in Jacksonville to determine whether to change the drugs used in round five. Because Ellie's bone marrow is not responding the way that we had all hoped, and because her counts are not re-bounding as high or quickly as we would like (indicating that her body is starting to tire out) the doctors looked into the possibility of changing the drugs to new ones that might effect the cancer in a different way (as opposed to giving her the same old ones and then STILL hitting her with new ones later). Another thing that they had to take into consideration was whether changing the drugs would taker her out of the running for a future treatment. The doctors decided that it would be best to continue on with the origional protocol. The second delay happened when we decided not to take Ellie in for chemo until we were able to sit down in person with Ellie's oncologist and listen to all of the information and express our thoughts and concerns in order to make the most informed decisions possible. During this meeting, we asked him to contact a doctor at Memorial Sloan Kettering Hospital in New York regarding a treatment option there. As of this morning, we have a plan set in motion, always knowing that there are variables along the way that may change the course...

Tonight Ellie will go into the hospital to start her fifth round of chemo, using the same protocol that she has been on. (On this protocol, cycles 1, 2, 4, and 6 use three chemo drugs; while cycles 3 and 5 use two completely different drugs. One of the drugs used on cycles 3 and 5 effects Ellie's hearing.)

After cycle 5 is complete, Ellie will undergo CT Scans of her head and abdomen as well as a re-check of her bone marrow. Once her counts are high enough, Ellie will undergo surgery to remove her left adrenal gland, which holds the primary tumor.

After surgery there are two possibilities. The point at which the road divides hinges on the bone marrow results.

First fork in the road: If Ellie's bone marrow still shows Neuroblastoma present, she will be given one or two cycles of chemo using one drug that she has had before, plus a totally different drug. These will be given to supress her immune system (as well as hopefully reduce the cancer in her body) to prepare her for a treatment in New York, given at Memorial Sloan Kettering. This treatment is known as Monoclonal Antibody. Ellie will be given a mouse antibody that should attatch to any Neuroblastoma in her body and "highlight" it in a way that enables her own defenses to identify and attack the cancer. (Somehow the Neuroblastoma cells are invisible to Ellie's defense system, and so this treatment was designed to put a spotlight on them and lead the person's body to do what it was designed to do: attack the intruders!) We love the whole concept of this treatment - it follows along with our basic belief that God designed our bodies to be able to heal and function in a wonderful way. The reason her immune system needs to be supressed first is so that her body will not be able to get distracted by the mouse antibody and attack that! This antibody is given as an outpatient proceedure, once every so many weeks over a yet-to-be-determined length of time. (We have heard that it can be between 6 months and 2 years.)

Second fork in the road: If Ellie's bone marrow shows no signs of Neuroblastoma, Ellie's doctor and the doctor in New York both recommend harvesting her stem cells. In New York, they prefer to store the stem cells and wait on the transplant, while continuing on with the Monoclonal Antibody at this point. (Some patients never need the transplant!) Ellie's oncologist here recommends going through with cycle 6, then proceeding to bone marrow transplant, followed by radiation to the tumor sites, with the option of going to NY for Monoclonal afterwards. (There is a study being done in Jacksonville using a monoclonal antibody which Ellie would be eligible for at that point, but there is only a 50% chance of Ellie getting the antibody because it's a study. We do not like this option.) Should Ellie's bone marrow be clear, it is our preference to go through with the one or two cycles of different chemo and then go to NY for treatment with the Monoclonal Antibody instead of following the standard protocol.

As you can see, we have been weighing many things over these past few weeks. We have been discussing much of this for months, actually. We have been waiting for the timing to be right, and in some ways God has allowed a natural flow to the course of things. We are trusting His leading in the direction and steps that are being taken now, and we trust that He will lead us when or if the time comes that we must decide between courses of action. Thank you all for the many prayers for wisdom on our behalf.

Today we have a flurry of activity to get ready for yet another hospital visit. The extra time was such a blessing for Ellies heath and strength. I'm hoping that her check in weight tonight will be 50 pounds! Last night she was 49.8. My next post will be from the hospital. I will keep you up on how it goes. Thanks so much for all of the love and support that you give! It means more to us that you will ever know.

Tuesday, February 13, 2007

The Latest...

I'm sorry I haven't posted any new updates. Not much has been happening. We are scheduled to sit down with Ellie's doctor on Thursday morning and ask him what he thinks and what his recommendations are for Ellie's future treatments. After that meeting, John and I will decide what step to take next. Until then, we are at home...and Ellie continues to eat well and slowly gain weight. Thanks so much for your enouraging comments and prayers for wisdom - we need them!

Friday, February 09, 2007

Decisions, Uncertainty, and... Peace

Ellie's blood work came back today about the same as it did earlier in the week. It is technically good enough for her to go into chemo. Because Ellie has been through 4 rounds already, her body is just not bouncing back as strong as it did after earlier treatments. It is possible for her to go back into the hospital any day now for her fifth cycle of chemo, but that will not happen until we discuss all of the options ahead of us with her doctor. Things that the doctors have been weighing are: the lack of clean bone marrows; her body's slower recovery from chemo; upcoming surgery; and future direction - such as bone marrow transplant or other possible treatments. We would so appreciate your prayers in the days ahead as we make decisions regarding Ellie's treatments. Our desire is to carefully consider all of the options that we are presented with and follow God's leading in the right direction to take. We are so very thankful that God always keeps His promise to give wisdom when we ask for it, and we trust Him to make the way clear. We have already seen God working in recent days to bring us help and support in unexpected ways. We are so overwhelmed by the goodness of God, and by His neverending grace...and even in the midst of heavy decisions, His peace.

Thursday, February 08, 2007

Bone Marrow Results

We did hear from the Doctor's office this morning regarding Ellie's bone marrow test. There is still disease present in Ellie's bone marrow, so there will be no harvest this time. As much as I am sorry that the bone marrow is not clean, I must admit that we are relieved that she won't have to go through harvest and surgery in close succession. Tomorrow we go in for blood work to see where her counts are. We should know tomorrow how close we are to starting round five. Thanks again for praying, and we will let you know what happens next!

Wednesday, February 07, 2007

Quick Update...

Thanks for praying for Ellie's bone marrows yesterday! It went well, and though Ellie had some pain when she first woke up, she hasn't complained of any since. She has been her same perky little self. We took her to Cracker Barrel as a special treat for all of the hard work she's done eating this week. She hasn't reached 50 pounds yet, but there was nothing she could have done any better to reach the goal...which tells us that we were reaching a little too far to make it to 50. She is close, and may get there yet.

As of today the results of the bone marrows are not in. We should know by tomorrow. Her blood work came back on the low side of normal, so rather than start chemo in the next two days, Ellie's doctor would like to re-check her blood on Friday. We are pleased about that, as we would have been a little nervous to see her go back for more chemo with the counts where they are. So...she has a few more days to EAT!!

I just wanted you to know what the latest is - I'll let you know when we get the bone marrow results in. Thanks to all for your love and prayers!

Monday, February 05, 2007

Late Night Talks...

Hi everyone! Sorry I've not posted in a while. We have been doing well, but busy. I've been trying to cram everything in that I need to do while Ellie is feeling well before the next cycle starts. Ellie has been feeling great...eating well and having lots of energy. The trick is keeping her from burning off all of the calories we put into her! Tomorrow morning Ellie goes in for bone marrow biopsies, then she should be going in for chemo Wednesday or Thursday. I'll let you know...

We have found that Ellie is still having some trouble with sadness at night. I think that's just how it goes...you finally rest from the activity of the day and all of the thoughts you've kept at bay come rushing in at once. We have been trying to get Ellie down at a decent hour (somehow during these months her bedtime keeps creeping later and later) but sometimes she just needs some talk time and occasionally a good cry. There are times that we just need to pray with Ellie and help her to think about good things and ask God to help her not to be afraid, and other times we need to talk things through. The other night Ellie started crying at bed time and began talking again about dying. Because I lost my dad, Ellie started worrying that John or I might die before she does, and the thought was too much for her to imagine. I told her that the thing I learned from losing my dad was that as painful as it was, I was able to go on...and be o.k. God was enough for me, and would be for her too should that ever happen. And then that sweet little girl looked me in the eyes and asked me what would happen if she went to Heaven first. With tears in my eyes, I looked right back at her and told her that I would be o.k. - and somehow I knew that it was true. She smiled the same wonderfully peaceful smile that she did the night we prayed about her dying in her sleep, and wiped my tears with her sleeve. We talked about the Holy Spirit living inside of us, and that the Bible calls Him our Comforter - that when painful things happen, He is the One who comforts us and gives us peace. Just one more difficult, but oh so special late night talk.

Thanks so much for checking in and praying. Please remember John tomorrow as he's in with Ellie during the procedure - it's at 10:00 a.m. I will let you know when we know what the schedule is for the week.

Thursday, February 01, 2007


Ellie's blood counts were pretty good today, but the platelets were not high enough to start chemo...yippee! We are scheduled to take her in for bone marrow biopsies on Tuesday and then start chemo on Wednesday or Thursday. I am so glad. We will have 5 or more days...for her to EAT. So that's the big news.

After the clinic appointment, we went to visit Ellie's new second cousin who is one week old. We've pretty much been keeping Ellie in a bubble these days, so we figure that a new baby is the safest person for her to be around...and vice-versa. Ellie was thrilled - she was able to hold baby Aiden and even helped to feed him his bottle.

Ellie and Aiden:

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