Special people....

I mentioned a while back that I would "introduce" some of the people I met while I was there at the Ronald McDonald House in Memphis. Most certainly I came back from this visit with a full heart. What I also came home with was a MOVED heart and mind...seeing firsthand the many families going though very difficult circumstances. I am going to write from memory from my visit...I did not write anything down. I should have. In fact, what I should have done is interview these special people to better represent them, their unique situations and feelings. I will do my best. I also should have taken pictures of them. When I make another visit during the chemotherapy phase of the treament, I will make sure to do these things.

One of the most memorable families I met there was from Lousianna. In fact I nicknamed Tim, the father, Lousianna (he doesn't know this...yet) as a reference. haha I seemed to see him A LOT in the kitchen and he had that great accent and was cookin' up a storm ALL the time. From gumbo to corn flake sweets...we had our own Food Network going on in there. His wife, Tanya, is a sweet, soft spoken woman who has a very calm personality type. She was often caring for their 3 year old son who has leukemia. Her parents, also from Baton Rouge, came to visit and were simply a delight. Jackie and Barry. I'll never forget. We had fun in the kitchen and dining area. I probably spent the most time chatting and laughing with them. We shared kitchen space. We made coffee for eachother. Jackie always seemed to have a pot brewing. She knew I loved it too. It was touching to see the grandparents be there for their little grandson. Another thing I remember is Tim asking if we heard their son screaming. Well, we did....across the hall and he cried because he hates his medicine. I would guess a 3 year old hates a lot of what he has to endure in his situation. But again, the pleasant attitude of the family during such a time was wonderful. I can't imagine it is easy. I'm certain it is not.

Another family I met was an Amish family. Matilda and Reuben. They have 3 children but were only there with 2 since the rooms allow for 4 people. Their daughter has leukemia. She is about 2 I think. She was simply adorable. They also had an infant son there. One thing I learned about leukemia is the necessity to protect them with "surgical" masks so as not to have them get sick. Their immune systems are so weak. Hers, Reuben said, was nonexistent. In fact, they also have to be very careful about what food they serve. It must be fresh and they can not give her any leftovers at all. He offered us chicken they didnt finish since they can't save it. Matilda, Jeni and I spent one night talking til after midnight actually. It was a rare treat for me. It was a sad reason for us all to be there together, but a growing and learning experience for me. Matilda is a beautiful person and they both were always so kind and calm. I kept worrying my hyper personality would scare them!! But we had a very nice time...again under unfortunate circumstances. You just have to try to make the best of what is unquestionably painful.

I met a mother named Mary I believe who has a 14 year old son with melanoma on his arm. She also has a 16 year old daughter who had brain cancer already. Can you imagine? She, too, was such a kind person. She mentioned how difficult it was to smile and be happy with what she is going through with her children. Her sons cancer is in his lymph nodes also.

I met another woman named Susan who has a 22 year old son with leukemia also. He, too, wore the mask all the time. He had been in remission but it came back. His lymph nodes got very swollen I guess and they had him checked. He hadn't been feeling well. I wish I could remember more details....

Trent was another very nice man with a 5 year old son with inoperable medulloblastoma. This type of cancer is what Jude has but because it is located on his brain stem, they are not able to remove it at all. He is undergoing radiation and chemotherapy. That is all that they can do.

These are but a few of the wonderful people that are at that house. I would have loved to hear more from them and also met others in the house to hear their stories. It was a privilege for me actually and these people probably have no idea the lasting impression they left on my heart. As I sit here typing, the emotions come flooding back. I had one emotional moment during that late night talk with Matilda and Jeni. Life has changed for all of them irreversibly leaving them with little control. They just go through the treaments and hope for the best possible outcome. I saw so many children all ages at the house and also at the hospital. Children that are so used to treatments....they are called in and they walk in like they are going to class. But, I was also glad for them to be in such good hands at St. Jude. I did not cry with any of them during my stay there. I did not want to make it more difficult emotionally than I know it must be. I do cry now remembering....

Family Fun!

Jude, Jeni and Jay on their way for an outing...to Graceland!!!

Can you believe these smiles???? This one is a 6th floor smile..... :)

Jay, Jude and Uncle Jeremy playing video games.....fun fun fun!!!

Who else but Auntie could bring this smile......and she looks just as happy to see her little nephew!

Bigger and better smiles!!!

I have not updated this in a little while for a couple reasons....one is that there has not been a whole lot of new stuff to blog about. That is actually a good thing for Jude. He remains fairly stable....hair still fallen out but seems to have stopped. It is thin for sure I guess, but he is not totally bald. He has enjoyed pulling it out himself...and did not want Jeni to shave his little head. He is saying all klinds of words, just slowly. He is reading things too....he is just having to practice and it takes more time than before. The great thing is that he is constantly improving little by little. They have been able to go on a few outings which is wonderful. That is the thing I felt bad about during my visit.....not for me....but for THEM!!! It has been difficult on so many levels for Jeni (Jay and Jude too I know) and being able to get a "break" from the normal routine of hospital stuff must be a welcome event. I can only imagine!!! I have a few pics to post that show the smiles and fun. Jude recently had the pleasure of having his auntie and uncle come visit...the aunt he adores!!!!! I'm sure that helped make his smiles bigger for sure! I know they have missed him terribly too and I would imagine many hugs, kisses and tears were shared by all. Jeni, Jude and Jay will be coming home in July I believe for a few weeks.....I know I personally am very very very happy about this. The family must be ecstatic about seeing them back HOME....even if temporary until he receives his chemotherapy. I know many friends also share these feelings....it seems like such a long time that they have been away. I hope to talk to Jeni on the phone tomorrow...I am having Jeni withdrawals. haha She is a ray of sunshine....I miss her infectious laugh. She warms my heart. Little Jude is going to be so welcomed by ALL....what a trooper. He has most certainly been through A LOT!!!!! I know you are all keeping them in your thoughts and prayers....as am I.

My other reason for not updating this blog has been pure busy-ness on my part. My sincere apologies. I actually miss being there and knowing and seeing all that they have happening.

It's getting to him a little...

I still miss my friend and can't wait til they can come back here for a few weeks. We are playing phone tag for the last day...but she did send me this update on little Judeebug. :)


"So here's a little update on the Judermeister. His hair is falling out like crazy. It's falling in his eyes, and when you pull some, a chunk comes out. Never ending chunks. I explained to him what is happening, and he's ok with it. He even pulls it out himself. He's still so cute even with these thinning bald areas. Today, we just hung out and watched snow buddies, (a disney straight to dvd movie) and then we went to the game room and played Jude's version of pool. He sits on the pool table and rolls the balls all over the place. We also drove to Sonic burger with Jay's dad and Jay. Other than that, Jude is doing great. He is getting a little frustrated with himself more than he was before. He is crying alot easier when he can't say something right or do something the way he wants to. It breaks my heart for him because his face looks so distraught. Almost scared. I just explain to him that it's ok if he doesn't do things perfect. He is new at talking and other stuff and he just has to practice. "

The "Program".... and "my friend"

I thought I'd write a little more about what ST. Jude does for Jude. The treatments from the hospital are all done at no cost. Wonderful! To be in the best place for treatment of this cancer and also not have any out of pocket expenses? Wow. They are at the Ronald McDonald House, which also does not cost them. Another added bonus. The pantry at the house is all donated items and every resident of the house is free to go pick out food for consumption. There are even girl scout cookies (I indulged in some Thin Mints myself...happily) and the girl scouts came one day. They are given an $80 Kroger grocery card each week to go buy things not offered at the RMH such as butter, eggs, meat, bread, produce, etc. They each have one shelf in one of the community refrigerators and one shelf in the comm. freezer. It is not much space actually. It was an experience for me even with the cooking since I am used to having and making food for a small army. haha But it worked out perfectly. You do get used to it. One day a group called "Kole's Club" , I think, brought a mexican food dinner for the entire house. Various organizations donate like this or make visits. They have a craft room at the house, 2 game rooms, even a little exercise room. There is a laundry room and there are a couple of playgrounds outside for kids that are well enough to be outdoors. We took Jude to one and Jeni went on the swings with him in her lap. He couldn't play on anything yet....but he'll love it when he can!!!
There is a shuttle that comes to the RMH, running every 1/2 hour, that takes them to St. Jude for their appointments (Mon-Fri...they have weekends off from hospital treaments) and the shuttle will also take them to Kroger and Walgreens. Once a week I think it takes them to Target for an hour and another shopping center once a month??? I forget. Their weekdays started at about 7:30 when they would take the shuttle to St. Jude. With all of the various appointments, it runs til about 1:30 and as late as 3:30 or so. Weekends are time off. There are activities and places to go where St. Jude patients and family members are free. The zoo we went to was one...but I believe they can go to Graceland and even a baseball game! I met many people while I was there. I asked Jeni to get some of their pictures so I can "introduce" them to you. I thoroughly enjoyed them and we had a lot of fun times actually, in spite of the reasons we were all there. I will mention them in another post.

My friend: What a gift it was for me to spend time there with Jeni. I knew I loved her before I went....but being able to spend this time...well....I adore her all the more! We had so many wonderful conversations and so many giggles and laughs. This despite the reason we were there together. "It is what it is". We did not spend our time being sad or depressed about the situation at all for the most part. Is it sad? Of course. Something that Jeni said really touched me deeply and made me feel so much for her....and hurt for her too. She said she does not expect her son to come out of all this the same as he was before. She is sad that she possibly will not have the Jude she had since there are many effects of the treatments he must go through for survival. These possible effects, in varying degrees, can be hearing loss and bone growth changes. It can also affect learning and memory. And she can't know what Jude's outcome will be until he is done. BUT...that being said, he will be alive and for that she is very pleased. She just wants to hold and love her son. She is a beautiful person...inside and out. She is someone I could enjoy being with no matter what we were doing. We laughed about things we have in common that we never knew! She is an amazing woman and exceptional mother. Her concern is Jude first, herself after. She has a heart of gold and is so generous, kind, loving and caring. She is selfless really. She kept thinking of ME during the week there...and I was thinking of how to be of help to HER! That's why I was there. Her laugh is adorably contagious and her personality is just as cute as can be. She is realistic about all of this, pushing herself to be strong. Her faith sustains her through what would be seemingly hopeless. She IS very strong, although I know she has her moments of vulnerability and downright sadness. I love Jeni more than I can ever express here in words. I told her I wished she saw herself as I see her. She is a "hero" to me.

The shunt is fine...Phew!

This is a quick post....I realized that I never said what happaned after my last night there where we were in the ER. He was held overnight, but released the next day. His shunt seems to be fine I guess and they are not really sure what caused him to exhibit those symptoms. The treatments are continuing as normal again. That is a good thing so he stays on schedule for getting all 31 radiation treatments and can come home for 3 weeks!!!! He has had 12 as of today. Only 19 more!!! I can't wait to see them again!!! I still cry and miss them terribly.

Jay's dad, Jerry, is visiting for a few days right now. Jeni's sister and brother in law are coming out next Wednesday and I know Jeni is very happy about that too. It is hard being so far away from the ones you love and that are so much a part of your life. If all goes according to schedule, they should be back in California for a few weeks in July sometime. Yay!!! I know I will have to call or text her every day. I'm having Jeni withdrawals. :) haha More on that later. I have much to say about my friend...but I have to feed my family!!

My last night! Waaaa....

I am writing this last "personal" post from the Ronald McDonald House where I am spending the night alone again tonight. Jay, Jeni and Jude are once again at the Le BonHeur hospital tonight in order for Jude to be observed. He was displaying similar symptoms as before with his head leaning forward chin to chest. His eyes were a little swollen and he did not seem to be responding as quickly as he had been. His radiation was done today at 4pm at St. Jude, so they weren't sure if his lethargy was caused by that. Jude also had mentioned that his tummy hurt when he laid his head back, so Jeni called the doctor and they were advised to bring him in. So, now he is being observed overnight. I can't wait to hear how this all goes tomorrow! I hope that his shunt is okay and there are no problems. That is a concern after it is put in. There always is the potential for malfunctioning. Jay and Jeni are always going to have to be aware of signs to look for so this can be addressed right away.

I am very, very sad tonight since I had to say goodbye in the Emergency Room. My flight is early in the morning and I had to come get my things together. This is the most I have cried since I have been here. I think the emotion of it all has come together in one sweep. I did not want to let go of Jeni when I was saying goodbye. It is extremely difficult. I can't imagine what she (and Jay too for that matter) is going through. I am a mother too...and I hurt when my children hurt. Jeni and Jay watch as their child has to go through all of these procedures and tests. They have to try to explain to Jude all that is going on and what is being done to him. (He likes to know every detail of every procedure.) It broke my heart to say goodbye to little Jude too. So helpless. I am very happy that I was able to come here. It is an experience I will never forget. I am not sure if I will even be able to sleep tonight actually. I can't wait to see my family though and hug and kiss them all....appreciating life and love. My heart is overflowing with love and concern and so are my eyes....with tears.

After the shunt!

Here is the king waving to his subjects...haha We got this crown at the House and brought it to him. All the children got one. (I actually got one too...haha)

Look at the energy he has now!

Here is Jude postsurgery on Skype talking to and seeing family members. He was blowing kisses, waving and saying all his sounds and words. Wow!!! He loves saying "No" ,"Milk", "Yah"....and others. He is starting to put sounds together....it seems like he will progress faster and faster. The neurosurgeon said the release of all the pressure will likely help his eyes to be aligned better.

Hydrocephalus diagnosis

Jude had been much more sleepy Sunday and Monday and complained of a little tummy ache and headache. They took him Sunday night to the hospital as I mentioned and have not gotten those results back...but when today did not seem to be going well, they knew something was up. He threw up twice after radiation. It reminded Jeni of how he was before he was diagnosed with medulloblastoma. A CT scan was done and it showed enlarged ventricles...the cerebrospinal fluid in his brain was not draining properly and there was severe hydrocephalus. It was determined that he needed a shunt put in. He was taken by ambulance from St. Jude to Le Bonheur hospital just down the way. The surgery went well. He came out of it so wonderfully. I can't believe what a change there was!!! He came out physically stronger with more energy. He is trying to say all kinds of words now too. And he loves picking his nose....even when mommy and daddy tell him to stop and get a tissue!!! haha He was doing that before...but for the past 2 days, he was so lethargic and kept wanting to just go to the room and was sleeping. Since fatigue is also a side effect of the radiation, it was not apparent anything was wrong until he threw up today.

This is how Jude was most of Monday and this morning...sleeping or sleepy. He did not talk very much and was not very hungry.

Jude and Crystal...the nurse he adores!!!

Jude gets the biggest smile whenever Crystal is around. He just loves her. He reaches for her hand when he sees her. She is a lot of fun! I'm getting smiley when I see her too! haha

St. Jude Hospital activities...

Jude was taken to the doctor last night since he had a mild fever. They gave him antibiotics and took a culture.

Jude had a very long day today. They got to the hospital at about 8am. He was very sleepy this morning and slept before his radiation and afterward. He did not eat enything until the afternoon since he is not supposed to eat for 8 hours or so prior to radiation. They receive a schedule for each day as to what appointments he will have. He had to go to triage for measurements also and then had physical therapy this afternoon. He was so tired and barely was able to get through it all. We were done at 3:30pm.

He goes again at 8:30 tomorrow morning. But tomorrow is only supposed to go until 1:30 or so. We are going to rent a car for the day and take a little drive around town. We are hoping to go have some Memphis BBQ also! Yummy!

Me, Jay and Jeni in front of a "camera chili" in the...what else...Chilis Care Center. This is where Jude goes for his radiation treatments every day. They sedate him and then do the treatment for about 20 minutes. When he wakes up, Jeni and Jay are called from the waiting room to be with him.

One of the painted walls in the hospital. The entire hospital is painted with various scenes. It is all so colorful!!!! There is artwork displayed all over the hospital too that patients have done. In the waiting area for the Physical Therapy there is a table where kids were painting and coloring. One little girl was painting on canvas that she gave to one of the physicians to put up in the hospital. So wonderful!!! These pictures can not possible represent all the beauty of the hospital. I hope to get to more of the floors to take more pictures.

Here is the cafeteria where everyone eats. When I say everyone....that's exactly what I mean. The nurses, doctors and staff all eat in this same cafeteria. It is an added bonus for the kids to see their doctors eating right along side of them. They have BBQ, soup, salads, sandwiches, Indian food, Sushi, Gelato, Pizza....what an assortment! I ate sushi today...even though I did not think I would eat ANY sushi while I was here. Jeni had fried green tomatoes!

The gorgeous statues in the lobby where we enter off the shuttle from the Ronald McDonald House.

One of the paintings above the lobby desk where we enter. There are 5 different scenes next to each other. This is one!!! They are all beautiful!

Sunday at the Kingdom Hall

Sunday, Jude was feeling good enough to attend the meeting, so we went. It was so nice to meet the ones in the congregation and they were so warm and welcoming to us!!! We were taken to lunch afterwards by the Gray family. Their daughter Morgan also has been a patient at St. Jude. She was diagnosed with Osteosarcoma. Her left leg was amputated at the hip. She has lost too much weight to get her prosthetic yet....but soon. She is only 14. Wow...

Jeni, Jude and Jay...Look he's sitting up!

The hall in Memphis..one of them anyways

Jeni, Betty Gray and me

Jude all ready to go!!!